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» LymeNet Flash » Questions and Discussion » Medical Questions » FDA/NIH confirms retrovirus findings in CFS patients (Page 1)

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Author Topic: FDA/NIH confirms retrovirus findings in CFS patients
m0joey
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"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."

http://online.wsj.com/article/SB10001424052748703846604575447744076968322.html?mod=WSJ_hpp_LEFTTopStories

http://www.cfscentral.com/ summarizes the study and backstory very well

Here is a link to all the media coverage: http://www.forums.aboutmecfs.org/showthread.php?7087-Media-Coverage-of-Dr.-Alters-NIH-paper-post-stories-here&p=114931

Here is the actual paper (long): http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

[ 08-23-2010, 09:00 PM: Message edited by: m0joey ]

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Tincup
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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.

[Big Grin]

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Marrit
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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?

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LymeCFIDSMCS
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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.).
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m0joey
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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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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.

`````````````````````````````````````````````````

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.

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m0joey
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Hi Rumigirl,

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.

I posted in detail here: http://www.forums.aboutmecfs.org/content.php?211-Dr.-Peterson-Update

** edited to remove practicing LLMD's name **

[ 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.

Stubborn old mules they are.

[Big Grin]

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Tincup
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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."

I agree.

[Big Grin]

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springshowers
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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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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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Marrit
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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.

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m0joey
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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)."

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Marrit
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I agree with you m0joey.

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):

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

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sparkle7
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Thanks m0joey... You've been a trooper in all of this.

Are you still going for the stem cell treatments?

-----

To add to the chaos- take a look at this...

Florida Dengue Fever Outbreak Leads Back to CIA and Army Experiments

http://www.truth-out.org/florida-dengue-fever-outbreak-leads-back-cia-and-army-experiments61565

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.

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m0joey
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Hey Sparkle,

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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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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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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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:

http://blogs.wsj.com/health/2010/08/25/does-x-the-virus-that-is-mark-the-spot-in-chronic-fatigue-syndrome/?KEYWORDS=xmrv

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.

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dali
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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!

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m0joey
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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

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aiden424
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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

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You never know how strong you are until being strong is the only choice you have.

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timaca
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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.

http://www.enterovirusfoundation.org/chronicinfections.shtml

Best, Timaca

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m0joey
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Hi Timaca,

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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Need Lots of Help
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So, can we get the drug ampligen now if we ask our doctor?
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Marrit
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aiden424:

: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?

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m0joey
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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.

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m0joey
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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.

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Tincup
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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.

[Big Grin]

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m0joey
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Tincup--

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.

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sparkle7
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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.

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Tincup
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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.

And that is my opinion.

[Big Grin]

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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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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.

````````````````````````````````````````````````

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!

[lol]

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sparkle7
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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...

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m0joey
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Tincup,

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.

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Marnie
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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.

http://www.jlr.org/cgi/content/full/41/4/554

Remember... Xenotropic murine ***leukemia*** virus-related virus (XMRV)

Tyrosine kinases ***add phosphate groups to the amino acid tyrosine*** in the target protein.

They can cause cancer by *** turning the receptor permanently on***(constitutively), even without signals from outside the cell.

XMRV proteins are also homologous to proteins of the growth factor signalling
networks

(e.g.***tyrosine kinases FLT3 and TYRO3***) which are relevant to
cancer-related growth

http://precedings.nature.com/documents/4669/version/1/files/npre20104669-1.pdf

EPA depresses vascular endothelial growth factor (VEGF)--specific tyrosine kinase receptor
activation and expression.

If you want/need to go the "medical route" to treat XMRV/HGRV

http://www.veteranstoday.com/2010/08/20/xmrv-renamed-to-hgrv/

(scroll down to the bottom - drug studies for CURE)

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kday
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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.

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m0joey
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Kday,

Thank you for your powerful, articulate post.

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.

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kday
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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.

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m0joey
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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.
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Need Lots of Help
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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???
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sparkle7
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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?

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Hoosiers51
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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.

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m0joey
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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.
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jarjar
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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.

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m0joey
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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.
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jarjar
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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.

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m0joey
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jarjar--

This is the note posted by the Whittemore Peterson Institute. http://www.facebook.com/note.php?note_id=184085913025 Note the first line is:

"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.

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timaca
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m0joey~
In my opinion, it's not going to be the same virus. In my case, we caught by labs, a low platelet and a low WBC during a time when I was quite sick neurologically...followed by antibody titers to Coxsackie B3 and B4 going through the roof. Both ID doctors I saw said that this was an issue with Coxsackie...which I had been battling, and which had gotten more or less under control, until it reactivated.

I've not been tested for XMRV...but based on what I have been tested for, there is more than one pathogen causing a problem in me. And it really does seem to me that my problems started with the reactivation of a bacterial pathogen first, followed by various viruses.

This is a complex problem, and I'm grateful that there are some good doctors working on it. And in my case, I'm very grateful to have two good ID doctors helping me.

Best, Timaca

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m0joey
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Hey timaca,

when I saw same virus, I mean the same retrovirus. I think there are going to be CFS patients that don't test for retroviruses at all. Dr Chia's son was cured by taking antivirals for his enteroviruses, so do I think he had a retroviral syndrome? No. It's just too bad he's had so much trouble getting pharmaceutical interest and grants for anti-enteroviral studies.

I'm really interested in seeing if the retroviral subset of CFS is caused by one partiular type of retrovirus as is seen in AIDS.

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m0joey
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Timaca,

I'm curious what your rationale is for that statement: bacterial reactivations followed by viral. Doesn't the phrase "bacterial reactivation" imply that bacteria are secondary? What are they being reactivated by?

If you saw my titers when I was at my sickest you'd have no question I had chronic EBV. I even had high early-antigen EBV markers 2 years into my illness. So I've treated the EBV and I'm still sick as a dog, so those titers don't mean a thing. What means something is treating something and functionally
improving, not just clinically. How did you feel after you treated these bacterial infections? Have you targeted the coxsackie with antivirals or frequency treatments and how did you feel after that?

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jarjar
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It really doesn't matter to me whether it is the same virus. The sad part,as Joey pointed out, is that they had a chance to start studying a retrovirus in 91 that the majority of cfs patients had that was found inside the mitochondria which was the hallmark problem of the disease. Who knows where that could have led them if they had spent money on researching instead of trying to discredit her. More money could have led to the discovery of other viruses or more knowledge of that virus.
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Need Lots of Help
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Well, I hope this Wittmore Petterson Institute has a lot of money. Enough to do all of the research needed. Because it sure seems like the CDC doesn't want to investigate a lot of things lately, not lyme disease or co-infections, not the retrovirus found in 1991, and they are already saying they can't reproduce the findings the Whitmore Petterson Institute found. Sad.

It seems as if they rather us be sick. And who does that help??

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m0joey
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The hardest part is certainly over. WPI's sina qua non was getting the attention of researchers, the govt, phamaceitical companies, and the public about a possible retrovirus being undetected in the blood supply and being associated with CFS. Create a panic that the public knows about (ie the 300+ articles about the FDA/NIH findings and even the CDC needs go do something for the sake of its PR.

Pharmaceutical companies will pour R&D into clinical trials because if ARV treatment indeed helps a sizeable subset of patients, the investment will pay off big time.

It all depends on treatment, and that first successful clinical trial will probably be the tipping point for WPI's continued success.

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Marrit
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m0joey,
I'm not sure Dr Chia cured his son. From what I read, his son is in "remission," that is, they are keeping it at bay with treatment.
Perhaps his true problem is an MLV, and the enterovirus is secondary.
Also, I don't know if everyone is aware, but EBV has been implicated in a whole host of diseases from MS to Hodgkin's Lymphoma to RA to cancers, etc. because titers of EBV are through the roof in so many people who become diseased.
That's why they thought EBV WAS the culprit.
I think it makes more sense that something bigger is driving the other viruses to reactivate.
I intend to be tested for XMRV through VIP, and I would be interested in my sister's results if she is tested, too, as she had Hodgkin's in her early 20's. And my mother had stomach lymphoma (cancer) in her early 60's.
REALLY WONDER if this thing is passed down through mother to child.
And now my son is showing symptoms.

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Marrit
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p.s. If my XMRV test is negative, then I'll aggressively go after the Lyme and test for every co-infection known to man!!
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sparkle7
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This is an interesting article...

H-E-R-V not H-I-V
An On/Off Switch for Retroviruses - Can it be that Simple?
by Liam Scheff

http://reducetheburden.org/?p=3112

I'm not sure how it relates to everyone's studies but I found it interesting. Seems to point to methylation as a potential "cure".

I have to do more studying about all of this - jeez - one has to have a PhD to understand all of this...

I can't help but being a bit suspect of some of the "new advances" & pushing the drug angle... Don't get me wrong - I'm glad it's coming out of the closet (so to speak) but I can't help to think about the huge profits to be made. Especially, if people have to take these, probably, expensive drugs for the rest of their lives...

There's some scary implications in all of this if one follows "conspiracy" theories.

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sparkle7
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PS - my mother had non-Hodgkins lymphoma... if that means anything.

How do you spell - epigenetics...?

PPS- Isn't it a bit "funny" how all of these things are getting closer & closer - like Lyme, opportunistic infections, "co-infections" parasites, HIV, AIDS, cancer, autism, herpes, CFS, fibromyalgia, Morgellons, vaccines...

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m0joey
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Just thought I'd mention that many in the CFS community have done exhaustive work on methylation with Rich Van K and Amy Yasko. This has definitely not been the answer for the vast majority of patients. If this were purely an endogenous issue, it seems methylation would be effective enough at silencing these viruses. There seems to be something more at play here. Endogenous viruses have evolved over time to comprise around 8% of our own DNA so whether any of them are actually pathogenic or not is very suspect.

"However, (endogenous retroviruses) are generally only infectious for a short time after integration as they acquire 'knockout' mutations during host DNA replication."-http://en.wikipedia.org/wiki/Endogenous_retrovirus
The border between exogenous and endogenous isn't clear cut. There is a transition period, and a MLV which is infectious to humans now may not be in a thousand years. In any case, it is much more statistically likely that a single exogenous retrovirus is infectious than any endogenous retrovirus, because we've been dealing with endogenous retroviruses for millions of years and the fact that they're endogenous implies that our immune systems already mounted a fitting response for that much longer.

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sixgoofykids
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quote:
Originally posted by sparkle7:

PPS- Isn't it a bit "funny" how all of these things are getting closer & closer - like Lyme, opportunistic infections, "co-infections" parasites, HIV, AIDS, cancer, autism, herpes, CFS, fibromyalgia, Morgellons, vaccines...

I think it's because at the bottom of all the issues you find a dysfunction of the body. Our bodies were designed to fight off intruders. When it gets weakened over time by our toxic environment and constant exposure to more and more bugs, it finally gives in.

My infections were primarily from ticks (for mOjoey there are retroviruses), but there were a lot of other things to address - KPU, toxins, hormones (thyroid, progesterone, adrenals), parasites, etc. My body didn't work right. When given the proper tools, my body became healthy again. It needed help, it wasn't strong enough to do it on its own.

Killing bugs is part of the equation. But only part. This is why the Bionic 880 is not a stand alone treatment. It works on Lyme, yes, but not all this other stuff. I think abx are the same. For people who don't see improvement, there might be more to look at.

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Hoosiers51
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m0joey,

I agree with what you said, that if 300 articles come out, like what has happened, the CDC can't ignore it. My hope with this CFS thing has always been, that if enough people are suffering from chronic fatigue, it will create a demand that the pharmaceutical companies won't be able to resist ignoring, from a financial standpoint ($$$). Once the cause has been found (like 20 times over, meaning, studies replicated) research on drugs and treatments will come (as I'm sure it's already happening), and that research will not only benefit those that want to treat with drugs, but those who will want to find natural solutions (if any are out there).

Even if some of the CFS population has Lyme, then some have this or that, I truly hope they are able to solve the problem for the section of those that might be suffering from chronic infection of some other kind.

CFS didn't just go away like a trend, so I hope that now more and more in pharma and academia will see it as a problem that needs a solution.

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m0joey
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Thanks six. I agree with just about everything you just said, most of the time.

I just don't know how infectious retroviruses fit into the terrain theory. Perhaps HIV-positive people with low-toxin, low-stress, high-immune bodies have had a lower incidence of AIDS, but it certainly has seemed to be indiscriminating in its path to destruction.

You and I both done as much terrain-building work as anyone, but obviously the results have been different. Of course, the safest way is to do both; maybe that's why Dr. Peterson says XMRV+ pos patients may end up needing to take both HIV drugs and immune modulators.

Even while killing retroviruses, I'll still be doing weekly chelation, mineral replenishment, making sure all my organs are minimally stressed and properly supported (particularly HPA axis), balancing energy flow, and managing secondary infections. The two-step approach obviously increases our chances of success, regardless of what primary infection we have.

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timaca
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m0joey~
In my case I was perfectly healthy until I got a steroid shot to my knee. 3 weeks later I became very ill with bizarre symptoms. Shortly thereafter I had knee surgery and was given IV vancomycin. 12 days later I was in the worst pain in my life and if I had died it would have been OK with me. I continued to fall apart, with 2 bouts of the "flu" occurring a month apart from each other. I struggled to get a diagnosis.

Looking back, and knowing what I now know, I believe a steroid shot to my knee reactivated a bacterial pathogen that was sitting latent in my knee joint. That was either lyme or Cpn. My reaction to the IV vancomycin was a huge herx. My two flu like episodes, were likely 2 different viruses reactivating.

For various reasons, I believe I'm battling both viral and bacterial pathogens. My story can be found here:
http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=display&thread=39 and here:

http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=display&thread=200

You will need to sign in to read the posts. I am Timaca there too.

Antibiotics, and antivirals have helped me. I am much better than I used to be. I am not well, but at least we have some idea what we are fighting.

Best, Timaca

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sparkle7
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Thanks everyone... re: Just thought I'd mention that many in the CFS community have done exhaustive work on methylation with Rich Van K and Amy Yasko. This has definitely not been the answer for the vast majority of patients.

Yes, I tried taking NAC, glutathione, selenium, etc. for a bit (like a month or 2) & I didn't feel much different. I did it as a sort of trial to see if further experimenting with methylation would be of any use to me.

It's a shame it can't be something easy like that. We all just have to keep searching. The majority of tests being inaccurate is very difficult for all of us. It really does help to know what we are fighting.

For me - I think I'm going to focus more on parasites. I feel better when I address that aspect. After - maybe the XMRV issue...?

It's alot to comprehend about retroviruses, though. It's not something you want to just run off & take the first drug that comes out for it.

It's just a shame that so many people have suffered with this for so long with no recognition & ridicule, besides... Yuppie Flu is fairly derogatory - for those who remember back then.

When will it end that people with unusual illnesses will stop being ridiculed for being ill? We could use a bit more compassion with all of this...

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sixgoofykids
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Yes, it's not 100% terrain. The terrain theory often leaves out that you have to fight the bugs as well as make the body healthy. But still the question remains, why you? Why do you have the retroviruses and others who were exposed do not? Why didn't I? I was certainly sick enough to have them and CFS was a problem for me, a primary problem dating back to the early 80's.

DNA? Is there something missing like KPU was for me? KPU seems to be the biggie for me, the bionic *just* killed the Lyme, but KPU balanced the mineral deficiency due to a genetic malfunction of my body.

Babesia is gone with me but I still need iron. Why?

I'm better but I still need thyroid, why?

We've done all the terrain work, but something is missing .... part is getting rid of the retrovirus and part is figuring out why it is living there to begin with. If you can figure that out (you'd make millions, but that's beside the point [Smile] ), then you can not only beat it down, but also make it so it doesn't cause a problem in the future.

All theory ... Obviously I don't know anything about retroviruses.

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m0joey
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Hey six,

Since we've both done photon therapy, a few of us were discussing photons vs rifing and I thought:

Technically treating infections with photons is reflecting back the emission of that pathogen through the homeopathic vial to restore harmony. In the process you do kill pathogens because they're causing an imbalance in your body but only to the extent that they're no longer imbalanced, whereas rifing is killing everything that is vulnerable to the rife frequency. In my mind, it is still homeopathic in nature and much more precise than rifing when you can find the appropriate vial.

So treating retroviruses with photon therapy may very well fit into a modified terrain theory, just like you didn't really start to watch the layers pull back until you treated the lyme.

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Leelee
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quote:
Originally posted by sparkle7:

When will it end that people with unusual illnesses will stop being ridiculed for being ill? We could use a bit more compassion with all of this...

You said it so eloquently. [Smile]

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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sparkle7
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Gee, thanks..

Has anyone been been able to get homeopathic XMRV? Have people been working with it?

I'm not sure if photons+homeopathy is better than rife... They are just different. It probably depends on the person. It may help to use some dowsing to see which it best for the individual.

I usually get NO for rife or zappers... Herbs seem to work best for me for some reason. The LightWorks was too unpredictable for me in combination with the parasites I may have. I still need to work on that first - I believe.

I bet genetics & toxins have something to do with XMRV. Could also be emotional issues, stress, getting a cold or the flu, EMFs or the straw that breaks the camel's back (so to speak)...? Might be getting bitten by a tick, flea, mosquito, spider, bed bug...?

People are under so much stress these days. I'm sure getting some deep relaxation doesn't hurt.

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Hoosiers51
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I don't mean to be a thread hijacker...just thought this was the best place to say it, since everyone here is interested in CFS and healing the body.

The more I think about it, I am starting to think that sleep disorders play a bigger role in CFS (though I realize having a sleep disorder excludes you from the CFS criteria) than most people realize or want to admit.

Just from using CPAP a couple weeks, I have gotten up before my alarm goes off once, after only 7 hours of sleep, which NEVER happens, and also, my dark eye rings are 50% better (and they were severe).

I hope everyone here has had a sleep study? And regardless of things like apnea, I think that there is more about "not getting deep sleep" that is still not understood, that might play a role in CFS. Like why do some people do so much better after being "knocked out" (getting into deeper stages of sleep) with Xyrem?

Sleep disorders explain immune issues. I don't even think I need to go into detail on that. If you aren't getting good sleep, your body is not healing, your immunity weakens, and opportunistic pathogens can then take over. People who aren't getting good sleep have lowered human growth hormone.

Untreated apnea can lead to hypertension, can worsen diabetes, can cause psych issues, etc etc. And that's just one sleep disorder.

I think this is just one of the many issues in the spectrum of CFS patients, but I hope everyone here has thoroughly investigated this road, because the technology to diagnose at least some of the disorders has been developed, and there is a known cure (positive airway pressure therapy), so you might as well rule out the things that are easy to cure first.

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m0joey
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Hey Hoosiers,

The vast majority of patients I know with CFS have severe sleep impairment, but make no bones about it: this is a symptom and not the cause of any case of true CFS. Many have done sleep studies and been found to have no stage 3 or 4 sleep, myself included. I saw a physician at UCLA who is one of the top sleep disorder specialists in the world, and she prescribed me trazodone which is supposed to increase stage 3 and 4 sleep, and said that would cure my "idiopathic fatigue" disorder. I don't have sleep apnea.

Granted trazodone doesn't work as well as xyrem because it doesn't stop alpha wave intrusions, but it helped my sleep impairment and nothing else. Even CFS patients I know of on xyrem either can't tolerate the drug or feel better but are far from cured.

I'm sure there are patients that have true sleep disorder that are chronically-fatigued, but they do not have CFS. I spoke with Dr. Benjamin Natelson who is the principal investigator of the Xyrem study for CFS patients, and he is one of the top CFS specialists in the country so you know he's not gonna be studying "chronically-fatigued" patients. Like the other published reports, some improvement but far from a cure.

Posts: 713 | From Los Angeles | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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mOjoey, yes, I think you're correct. I saw the photons as strengthening the body to fight the bugs while the vials were the roadmap pointing out what the problem was. I think that was why you had to treat with photons if you taped the vials to yourself. Taping the vials without the support could be a bad idea just as treating with photons without the vials might give the energy with no direction.

I was wondering. I used saliva/phlegm for viruses like common colds and flu. Would homeopathic dilutions of saliva work better than blood for retroviruses? Obviously working SLOWLY for you.

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sixgoofykids.blogspot.com

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Marrit
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Hoosiers51,
I have CFS symptoms, predominantly recurring flu-like symptoms and severe post-exercise crash. I think I might have a sleep disorder, possibly central sleep apnea, but I don't have insurance and can't afford the sleep study. I slept like a rock all my life until my immune system crashed 14 years ago. After I got sick, I went through years of total insomnia and now can sleep some but with frequent awakenings.
I don't snore, but I wake often either with a gasp or sharp intake of breath -- or simply heart pounding wildly. It takes awhile to get calm again, and then back to sleep only to reoccur later ... and I've had the dark undereye circles for many years, but I only developed the breathing cessation issue within the past 6 years (that I'm aware of).

Posts: 277 | From Pennsylvania | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Marrit
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Sorry, perhaps I should start a new thread since this is off topic?
Posts: 277 | From Pennsylvania | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
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