posted
I just got my XMRV test results back and I am positive. I got sick in March 2008, got diagnosed with Lyme in September 2008 (Positive IGenex test, 7 bands, IGM). I have been undertreatment since then and in the last 8 months been with one of the top Lyme docs in the country.
I feel like I have stopped improving on treatment and have been looking for other things that could be holding my recovery back so I decided to get checked for XMRV.
There really are no treatment options for XMRV and most LLMD doctors seem confused by XRMV which I understand since there is not many studies and data out on it yet.
Anyone else with Lyme have XMRV?
[ 04-18-2010, 08:21 PM: Message edited by: LLYME ]
Posts: 92 | From Virginia | Registered: Jan 2009
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Tincup
Honored Contributor (10K+ posts)
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posted
Personally, I am not convinced it is "the answer" to anything, but I may not be in the majority with that opinion?
I look at it more like Epstein Barr at this point (in Lyme patients and others), at least till there is something much more substantial out there about it.
I also think it clouds the picture for our situation ... and since there is no treatment for it... not much we can do anyhow.
Maybe check with the Chronic Fatigue folks for some information about it? They seem to be focusing on it to explain their symptoms .... and maybe they have some insight that could help?
posted
The thing about Epstein Barr, HHV-6, and these other virus is a majority of the population has it, including most healthy people. XMRV is only found in 3% of healthy controls and 95% of people with CFS so that sets it apart significantly. It is also a retro-virus which makes it more suspect.
There is also a study released on April 1 that shows the possibility of three different HIV drugs that may work against XMRV: Raltegravir Is a Potent Inhibitor of XMRV
Hoosiers51
Frequent Contributor (1K+ posts)
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posted
I haven't gotten XMRV tested yet because we are waiting on the kits to become available, from the lab my doc wants to use.
I am positive for Lyme with many bands on the WB, but my illness has been very CFS-like since the beginning, so we are interested to see whether I have XMRV.
I am on the fence as to how significant I feel it is. Sure, not many people in the general, healthy population have it.....but I have very little in common with those people....I'm not healthy! At all.
So I wonder if it's something that will test positive in a lot of us "chronically ill" folks, though it may not be the source of our illness or the cause of our symptoms.
However, if there is a treatment that works, I'd definitely try it.
What are you thinking of doing for the XMRV???
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I have had CFS for years, and recently diagnosed with lyme. The symptoms for CFS and lyme are often interchangeable.
I have not been tested for XMRV, because, so far there is no treatment. I thought they would be considering antiviral HIV drugs, so thank you for that article. If, and when, they start treating XMRV, we still have to discern if we want to take these HIV drugs.
I don't know what comes first; lyme, viruses, XMRV, or a number of other various pathogens?
Posts: 964 | From san diego | Registered: Oct 2009
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Bugg
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posted
LLyme-
I'm glad you posted this and I hope XMRV is the missing piece for you to recover your health. I, too, have been following this very closely but have not been tested yet.
If you don't mind sharing, what are your remaining symptoms? I wonder if people with XMRV have a "unique" and "distinguishing" symptom???
Posts: 1155 | From Southeast | Registered: Oct 2005
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sutherngrl
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posted
Bugg thats a good question!
I was going to just ignore this XMRV thing, but now I'm starting to want to investigate.
Two years of treatment and only slight improvement. There has to be more going on!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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merrygirl
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posted
I am awaiting the xmrv results, should be ready next week. boy it takes a long time!!
My pcp said if I am positive he would try AZT on me.
He thinks this discovery is huge.
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posted
I follow a few chronic fatigue support groups. And I've recently read about someone using AZT to treat her XMRV. She stated that she's had a 25% improvement in 1 month.
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sutherngrl
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posted
Merrygirl, please let us know about your test; and keep us updated if your doctor treats you.
This could be an answer for some of us!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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daystar1952
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posted
I posted a message about XMRV being a mouse virus and how ticks feed off of mice. My friend who is a microbiologist,sued Pfizer for several reasons, one of them due to unsafe working conditions and becoming ill, she believes to an exposure to a lentivirus and or the mouse leukemia virus , which is very close to the XMRV we are speaking of.
The link is below. You may want to search on my blog for the numerous media stories concerning this case.....Pfizer would be a good search word
I don't know if my hypothesis makes any sense ...let me know your thoughts
Pinelady
Frequent Contributor (5K+ posts)
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posted
You might want to do some research on "Treating xmrv virus with coconut oil".
Loads of info out there while they are researching it in cancers and HIV.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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quote:Originally posted by Hoosiers51: I haven't gotten XMRV tested yet because we are waiting on the kits to become available, from the lab my doc wants to use.
There is only one lab that can test for it accurately and that is VIPdx. It requires a lot of blood to culture and test for XMRV and all the other labs offering a test are pretty suspect. Dr. Judy Mikovits explains why these other labs are not a good idea to get tested through in this video: http://www.prohealth.com/library/showarticle.cfm?libid=15114
quote:Originally posted by Bugg: LLyme-
I'm glad you posted this and I hope XMRV is the missing piece for you to recover your health. I, too, have been following this very closely but have not been tested yet.
If you don't mind sharing, what are your remaining symptoms? I wonder if people with XMRV have a "unique" and "distinguishing" symptom???
I have had mostly neurological symptoms from day one; dizziness, headaches, extremely bad brain fog, extreme fatigue and some pain. The pain is gone and most symptoms have improved by my brain fog and extreme fatigue have not improved much, the basic CFS symptoms.
quote:Originally posted by merrygirl: I am awaiting the xmrv results, should be ready next week. boy it takes a long time!!
It took me two months to receive the test kit and then another two months to receive the test results.
quote:Originally posted by ChuckG: Which lab? Which test? Where are your IGeneX results?
I got tested through VIPdx for XMRV. I am not sure what you are asking about my Igenex test?
Posts: 92 | From Virginia | Registered: Jan 2009
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Lymeorsomething
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posted
There seems to have been mixed studies so far.
I'm not sure that it's worth getting wound up about just yet.
Yes, EBV is common and generally not a problem except in the presence of something like lyme, which undercuts the immune system. Then it can be a problem.
So maybe XMRV is uncommon but generally harmless...can't be sure. Maybe it is a problem in the presence of another immune suppressor...many variables.
It seems to be associated with prostate cancer but many viruses, even common ones, are associated with cancer.
posted
Lymeorsomething, We should know in a few weeks the legitimacy of the WPI\VPIdx XMRV testing method which was not used in the follow up studies.
A XMRV working group has been created which consists of the NIH, CDC, FDA, WPI, and National Cancer Institute. The working group is currently running blinded test of the XMRV blood test.
quote:The federal working group's project has three phases. First, labs at six participants--including the FDA, the National Cancer Institute, the CDC, and the Whittemore Peterson lab--are using a panel of blood samples to try to establish which of the labs' tests are sensitive and reliable enough to find XMRV in the blood. Results are expected in a few weeks.
In the second phase, also launched, a panel of around 350 different blood samples developed by Dr. Busch's team will be sent to four different labs. Some of the samples are from chronic fatigue patients known to have XMRV. Others from healthy donors have been spiked with the virus or have tested negative. All the samples are blinded, and the study will see whether the different labs can agree on XMRV positive status for chronic fatigue patients.
A third phase may be launched later, using frozen specimens in federal repositories dating to the 1970s. These repositories link donors to recipients and will allow researchers to see if XMRV was transferred in transfusions and help determine prevalence in the past as well as today, as well as geographical clusters or associations with age and gender.
We should be getting some solid answers to the legitimacy of the test and the connection between XMRV and CFS soon.
I completely agree on not getting wound up on one virus as the cause. The CFS & Lyme community has been jumping form one virus to another as the reason for there remaining symptoms over the years just to get let down.
[ 04-16-2010, 10:54 PM: Message edited by: LLYME ]
Posts: 92 | From Virginia | Registered: Jan 2009
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posted
I was tested five weeks a go but still haven't got the results back yet. I am anxious for the results.
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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Lymeorsomething
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posted
Thanks for the info, LLyme.
If the UK study was accurate, it would seem to me that CFS-like conditions have another cause and that XMRV is just a less-important bystander. However, the jury is still out.
I'd put my money--well, my monopoly money--on the spirochetes
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
There are people who will not recognize the legitimacy of this virus, no matter what, and will do everything they can to disprove it, including choosing people who differ in presentation, and using different lab techniques to ensure there are no positives. Does this sound familiar?
The UK study was suspect on all counts and should not be considered an adequate response to the XMRV findings.
Posts: 8430 | From Not available | Registered: Oct 2000
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Pinelady
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posted
I agree somewhat. It took years for them to say the SV40 was dangerous much less how we became infected.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I don't think Lyme patients need to be threatened by XMRV. I don't think it's going to take anything away from Lyme. I had a very positive IGG and IGM western blot. My doctor doesn't think that I don't have Lyme, he thinks I have LYME and XMRV.
If I do have XMRV, I can treat Lyme the rest of my life and probably never get better. I think we all need to be open to research if we want our lives back. If it's not XMRV, then it's something else too. I have treated Lyme for over five years with very little improvement.
-------------------- 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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daystar1952
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posted
The XMRV virus is highly related to MLV...a mouse leukemia retrovirus. The mouse is the biggest vector for Bb and as we know ticks feed on the mice and then feed on us.
A molecular biologist friend who watched the video of Judy Mikovitz speaking of XMRV, saying that it was related to MLV,....said that that was the family of virus they were working on at Pfizer when she became ill. There was also a lentivirus in question. http://lymesentinel.blogspot.com/search?q=pfizer
There are several articles on this page about her suing Pfizer for unsafe working conditions, freedom of speech, being fired out of retaliation for reporting safety issues. Her symptoms....not counting her periodic paralysis...closely blends with symptoms of Lyme and CFS.
I asked her if the mouse virus could cross the species boundaries naturally. She said that was highly unlikely but it can happen. She said it can be done through genetic engineering...which was her field.Her job was to create genetic missles to make the stem cells sick....which somehow helps them look for cures (I don't understand it all)
So...what I am wondering is...do many lyme patients have this XMRV because it is a mouse virus and they are getting it from tick bites?
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Pinelady
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posted
Good question daystar. You know I think to name it is to know it.
And I really don't think they do.
For all they know it could be related to an entirely different varmit.
But I am glad its name is not Possum.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
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posted
Some new articles on XMRV as well as others.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lymebytes
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Here is the answer to your question below. ~~~~~~~~~~~~~~~
What can my doctor do for me if I test positive to the XMRV virus? [view answer...]
Research is still ongoing to determine the best treatments for those who are positive for XMRV. It is possible that antiviral therapies developed for other retroviruses may be useful against another RNA virus like XMRV. However, these are generally toxic therapies with considerable side effects making it imperative that one be very careful before beginning any new therapies. Obviously, only begin any therapies approved by your physician.
Pinelady
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posted
Here are a couple of discussions on it. I find it surprising most never mention Lyme. Yet the implications in the way it is described in behavior says Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I don't understand why everyone has ignored Borna virus regarding lyme patients. Borna Disease Virus made a big splash several years ago when many schizophrenic patients were found to have this RNA virus. And I have read that Dr K believes all Lyme patients have this virus.
Hubby has tested positive for it 4 or 5 times -- but currently no lab in the U.S. even offers a test -- only tests available are from Germany.
Do a search here on LymeNet and see how little attention is paid to this virus.
Bea Seibert
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Pinelady
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posted
Your right Bea. With the discovery of the porcine virus supposedly in the Rotavaccine-now they are
looking with one eye closed wondering what all they may have taken up from cells used from everything from monkeys to caterpillars.
XMRV perhaps, HIV?
Who knows.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
its not a virus, its a retro virus, they really dont even know what that means,
truth be told i think its just an epigentic marker, as such i doubt any meds will work on it except emotional/psych work, homeopathy or possibly rife.
Posts: 23 | From mass | Registered: Aug 2007
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sutherngrl
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posted
So Jeffe, does this mean that some ppl, probably those of us that have a hard time getting well, have this as a possible genetic defect that causes us to have issues getting well?
In other words its not really a virus, just presents as a possible virus? Please explain!
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merrygirl
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posted
HIV is a retrovirus as well and I doubt that psych work and rife are going to work on that .....
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Pinelady
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posted
Well there's one thing for sure there are many cell
lines they need to be setting both eyes on.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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quote:Originally posted by jeffe: its not a virus, its a retro virus, they really dont even know what that means,
truth be told i think its just an epigentic marker, as such i doubt any meds will work on it except emotional/psych work, homeopathy or possibly rife.
Wow, that's one of the most bizarre statements I've ever heard.
-------------------- 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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susank
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posted
Curious- could you share your CBC results ie white and red blood cell counts and/or anything else where you tested "out of range" high/low neg/pos?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
Dr. Judy Mikovits: Principal Investigator, Whittemore-Peterson Institute, and auther of the XMRV study has mentioned chronic lyme. In the video linked in this thread and in a recent interview
quote:Q: How might the finding of the XMRV virus relate to Lyme Disease? A: We are seeing XMRV in Chronic Lyme patients sent to us from several physicians. The hypothesis that chronic XMRV infection creates an underlying immune deficiency is consistent with many co-pathogens including Lyme.
posted
I'm cross-posting this from the thread XMRV and Lyme.
I attended a lyme conference today where the famous Dr. B spoke. There was also a presentation made by a lyme/cfs/aids doctor who is working with Judy Mikovitz, and testing lyme patients for XMRV.
He said that the dysregulation of the immune system by this retrovirus could hold the key to lyme disease treatment, especially those who do not improve with traditional treatment.
He said that they have begun selective treatment with HIV drugs which are being used successfully on XMRV. Protease inhibitors are not effective, but a combination of other HIV drugs are, specifically Raltegravir.
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