I hope many of you were able to watch the presentation on the web on ProHealth given by Dr. Judy Mikovits regarding the XMRV retrovirus and it's role in CFS and (lyme).
(Thanks to the lymeposters on Lymenet who told us about this presentation!!!!)
The presentation was extremely informative and fascinating....Unfortunately, part of the live video feed was interrupted...So I only saw the beginning and the end (question and answer session)....For those wanting to see the entire presentation, it will be available in-full, on-line next week at ProHealth...I encourage you to watch it...
Anyway, now to what may interest the "chronic lyme-post-lyme" patients (whatever label you prefer)....Dr. Mikovits says they are actually looking and currently studying a "chronic lyme cohort group". This is a group of patients who have treated for some time with antibiotics but are still ill. It is her theory that a subset of lyme patients WHO DO NOT RECOVER WITH REPEATED ANTIBIOTIC TREATMENT may be infected with the retrovirus, XMRV.
She theorizes that the immune system in these patients has neuro-immune dysfunction. These patients cannot get well because their immune systems are dysfunctional due to the added burden of XMRV.
It is her theory that treating some of these chronic lyme patients with an anti-retroviral may help them finally beat the lyme and recover their lives.
She said retroviruses don't infect people differently. However, some people's immune systems can control the retrovirus and keep it down whereas others cannot....there may be additional environmental factors....other viruses...genetics that come into play....
They are currently studying the "inflammatory markers" as well...the cytokines anc chemokines and how they cluster in infected persons...but the data has not yet been analyzed....Apparently the results can fluctuate based on when the test is taken and the activity of the white blood cells at the time the test is drawn....
The key in the treatment of the retrovirus is to cut down on the transcription (replication) of the retrovirus (when the virus replicates, it rewrites the DNA)....Reverse transcriptatse is ONLY found in retroviruses...
A retrovius IS NOT UBIQUITOUS like EBV, for ex., where 90% of the population carries EBV....
She said they think some event, trigger, stress, illness, lyme...whatever impacts the person who has XMRV and the immune system just can't handle it...this is why people with CFS or lyme may remain sick for years and years....
--She said there is an atypical form of MS, which is non-demyelating, where they are finding entire families with neuro-immmune disease...she said they are finding XMRV in many of these family members....
--If you have taken the XMRV test and tested NEGATIVE through PCR, you MAY NOT BE NEGATIVE. The best testing is the VIPDX test. For answers about questions regarding XMRV and testing, go to:
Some of the audience members asked about things that could be taken right now by CFS patients until they have the anti-retrovirus. Dr. Mikovits said to be very careful with supplements as they aren't regulated by the FDA and may contain things that could hurt you.....She said she would look to things like non-steroidal anti-inflammatories, things that help regulate normal cortisol levels, NAcetylcysteine and glutathione which help with oxidative stress...(She also mentioned that progesterone could upregulate the virus)....She mentioned that perhaps things that upregulate NK cell function could help....
Anyway, if anyone else has comments to add or has spoken with the Whitemore Peterson Institute regarding lyme and XMRV, I would love it if you would contribute to this thread...
Hope this helps...
[ 01-27-2010, 07:34 PM: Message edited by: Bugg ]
Posted by Keebler (Member # 12673) on :
- Bugg,
Thanks so much for this. I can't quite read it right now, but sure will study it soon.
I don't buy the bit about no supplement helping but she has to cover herself there and brands differ, etc. But NSAIDS pose lots of risks. There has to be a safer way.
Clearly, more will be coming from all angles, I hope. I wonder how Buhner would approach this.
-=======
Hey, Bugg,
I wonder if you might consider adding XMRV to your headline so that it will come up for a search of XMRV ? Thanks. -
Posted by Bugg (Member # 8095) on :
She also said that positive tests will be accepted into clinical trials based on the order in which they are received....meaning if you are tested sooner and test positive you will be placed into a clinical trial sooner....
Posted by shazdancer (Member # 1436) on :
Thanks, Bugg, very interesting.
So you are saying that if you test positive, there is currently no available anti-retroviral treatment, except for those in clinical trials, is that correct?
Shaz
Posted by Keebler (Member # 12673) on :
- Still, even if no treatment available one would know what to avoid.
I also have to think that there are other researchers who may have ideas of what might help.
If the tests need perfecting, waiting may be helpful.
However, If the test is a true and accurate measure, performed correctly, it's always good to know the truth. There are many ways to approach a problem.
I wonder who will be sponsoring the trials and what drug they will be testing. But, that's probably all there - waiting for me to read it. -
Posted by Bugg (Member # 8095) on :
Actually the middle part of the video crashed so I don't have answers to some of your questions....The part that crashed discussed where they are with the clinical trials for the anti-retroviral....
The full video should be available for viewing on ProHealth next week....
Posted by lou (Member # 81) on :
Would it be accurate to say that only people who have significant fatigue would have this virus? In other words, if you are a lyme patient without CFS-like fatigue, you would not need treatment for XMRV?
Or might that area have been in the crashed part of the program?
Posted by sickpuppy (Member # 23846) on :
There's the "regulate cortisol" / adrenal fatigue issue again. And "NAcetylcysteine and glutathione which help with oxidative stress"--Keebler, you were talking about this for vertigo, right?
Sounds like it's a case of some of the bullets being the same for lyme and XMRV.
What is thought to be so bad about supplements? Just that they aren't regulated? Or heavy metals?
I'm so interested in this XMRV topic unfolding. Thanks Bugg for posting. Let's keep following this!
Posted by Bugg (Member # 8095) on :
Lou-I have the same question...
Even if XMRV turns out to not apply to lyme patients, I am hoping all of the attention and research will lead to a better understanding of the immune system and inflammatory conditions...
(A lady in the audience said she tested positive for XMRV and so did her son. Her son was also diagnosed with lyme when he was 7 years old.)
So many research institutions are getting involved in studying this...Cleveland Clinic, National Cancer Institute, Vanderbilt, Whittemore Peterson...
I've often been sooooooooooooooo frustrated that there's such a lack of understanding regarding the immune system and inflammatory systems of chronic lyme patients....
[ 01-27-2010, 07:37 PM: Message edited by: Bugg ]
Posted by springshowers (Member # 19863) on :
"--If you have taken the XMRV test and tested NEGATIVE through PCR, you MAY NOT BE NEGATIVE. The best testing is the VIPDX test. For answers about questions regarding XMRV and testing, go to: "
How do we know what kind of test we got and where to get the most accurate test..?
Posted by peter j (Member # 11825) on :
Thanks for the post Bugg.
"Some of the audience members asked about things that could be taken right now by CFS patients until they have the anti-retrovirus. Dr. Mikovits said to be very careful with supplements as they aren't regulated by the FDA and may contain things that could hurt you.....She said she would look to things like non-steroidal anti-inflammatories, things that help regulate normal cortisol levels, NAcetylcysteine and glutathione which help with oxidative stress...(She also mentioned that progesterone could upregulate the virus)...."
Just the other day I though that maybe why some of the lyme patients respond to Glutathione is because it helps with treating the XMRV (and not the lyme)...
Just like this drug (Rituximab) apperantly helps those who have the syndrome diagnosis ME/CFS:
If you were NOT TESTED by VIPDX laboratory, then you most likely got the PCR test (this is my understanding).....You can always call the lab where you were tested and ask them if they ran the PCR. If you were a part of the Whitmore Peterson Institute study, you can actually contact Dr. Mikovits by e-mail and she will give you your results (whether they were positive or negative)...
Again, though, before doing anything, I would wait to see the video in its entirety next week on ProHealth as I'm only supplying a synopsis of what I saw....I don't want to misdirect you in any way....
Posted by Al (Member # 9420) on :
No test currently exists for chronic fatigue syndrome. Scientists have identified thousands of genes which appear to play a role in chronic fatigue syndrome (CFS). A team from Glasgow University found a particular pattern of genetic activity among 50 people with the condition.
They hope their work, which is still in its early stages, could lead to a diagnostic test and new treatments.
CFS - or myalgic encephalomyelitis (ME) - used to be dismissed as "yuppie flu" and has been widely recognised as a disease only in recent years.
Gene signature
Lead researcher Dr John Gow said: "It is another year's development before it becomes an accepted diagnostic test and, similarly, we need to do some trials with therapy before that becomes widely available. But it is exciting."
By looking at the whole genome of about 50 people with chronic fatigue syndrome, they discovered certain genes that were different to those seen in healthy people of a similar age and sex.
We think we can find drug treatments that will be beneficial to patients.
Dr Gow
Dr Gow said: "We have identified genes which were up-regulated compared with genes in normal healthy individuals, suggesting we could possibly have a diagnostic test for this syndrome which doesn't exist at the moment."
But he said they needed to check that this "gene signature" was specific for chronic fatigue syndrome by looking at more people with the condition, which would take a year or so.
Colleagues at the same university are also looking at targeting treatments towards the faulty biochemical pathways caused by the overactive genes in chronic fatigue syndrome.
Future hope
These drugs are already on the market for other conditions, so if they are proved to be useful in chronic fatigue syndrome, they could be given to patients in the near future.
"Our work has given us clues as to which pathways are up- or down-regulated and we know which drugs activate different pathways, so we think we can find drug treatments that will be beneficial to patients," Dr Gow said.
"Having said that, it really needs to go through proper trials before these drugs become widely available."
A spokesman from Action for ME said: "We are very interested to know and explore more."
He said it was good that work such as this was being carried out into chronic fatigue syndrome.
Posted by n.northernlights (Member # 17934) on :
The cooperative labs test is only pcr, but most people who got the Vipdx (former redlabs, and initially started by professor dr. Kenny De Meirleir) also ordered the test where they incubated the virus and pcr tested.
Now redlabs in Belgium with the same K. De Meirlleir is working on doing the excact same test as vipdx, it must be abdolutely the same in all details to work, down from the collecting tubes and all the chemicals.
Posted by LymeCFIDSMCS (Member # 13573) on :
Thanks for posting this about Dr. Mikovitz' comments on Lyme/XMRV. Dr. Martin Lerner has found a similar thing in his ME/CFS patients: that there is a *subset* with Lyme, though he treats with antivirals (as opposed to antiretrovirals) as well as antibiotics for this group.
I think the defining feature to look for is the phenomenon known as push-crash, which is so characteristic of ME/CFS, rather than "fatigue." The kinds of push-crash stories you hear with ME/CFS to me read very differently from Lyme stories: for example, Laura Hillenbrand (ME/CFS patient) writes about crashing for over a decade from a car trip. This is the type of crash you hear about in ME/CFS, but also crashes from other daily exertions. Often a crash will not start until 24-48 hours after an exertion (mental, physical, even orthostatic changes) -- in other words, two days after an activity, a patient might start to have a dramatic exacerbation in all symptoms.
I think any Lyme patients with severe push-crash probably do have XMRV or should be suspected of it. These won't be the only cases of course but anyone with severe push-crash should probably strongly suspect XMRV if they have other ME/CFS symptoms.
That's really interesting Dr. Mikovitz said progesterone might up-regulate the virus!
Posted by Bugg (Member # 8095) on :
LymeCFIDSMCS-
That's a very interesting post......
I've often wondered the same thing about CFS and chronic lyme. I have a very good friend who has had ME/CFS for years. His CFS was precipitated by a motorcycle accident. I am pretty much the classic chronic lyme patient; I've had years of antibiotics and I'm still not well. Although some of his symptoms and my symptoms overlap, one big difference is the post-exertional "crash" which I don't have.
He also has an achey/flu-like muscle pain whereas mine is more of a diffuse, toothache-like pain that is just under the skin....
Incidentally, during the first year or two after the tickbite, I had some activated viruses along with the positive lyme tests. When my viruses WERE ACTIVATED AND I WAS AT MY SICKEST, I did have post-exertional crash....(no more after extensive lyme treatment)....
So, as of now, what does my chronic lyme body have in common with my friend with ME/CFS??? Perhaps it is XMRV or perhaps it's just we are both depleted in glutathione or both.....
Dr. Mikovitz kept mentioning HIV as it is a retrovirus like XMRV. As many people know, it's well-documented that patients with HIV often have lower glutathione levels and suffer from ROS. Some studies showed raising glutathione in HIV patients actually hindered the replication of the retrovirus.
When asked about taking supplements for XMRV, Dr. Mikovitz mentioned taking NAC to raise glutathione. She mentioned XMRV induces ROS. I can only infer that she assumed raising the glutathione might help with oxidative stress and quite possibly(my speculation) slow the replication of XMRV. She meniontioned specifically that glutathione could help upregulate NK cell function....
I did learn recently from a Vanderbilt researcher that people who are low in glutathione CANNOT SUSTAIN their levels if they don't maintain their supplementation. I know many lyme patients get infusions or intermittently take NAC and then stop. He said if you have an illness that causes glutathione deficiency, you must maintain supplementation....
[ 01-27-2010, 07:37 PM: Message edited by: Bugg ]
Posted by lightparfait (Member # 22022) on :
A new paper 'Inflammation and central nervous system Lyme disease' has just been published in the journal Neurobiology of Disease authored by Dr. Brian Fallon, Director of the Columbia Lyme and Tick-Borne Diseases Research Center, Dr. David Hardesty, Lyme Center Neurologist. and fellows Elizabeth Levin and Pernilla Schweitzer.
Neurologic manifestations of Lyme disease occur in 10-15% of individuals with untreated Lyme. This paper discusses the symptoms of neurologic Lyme and reviews experimental studies that provide insight into the possible mechanisms of inflammation following Borrelia infection and contributing risk factors.
A fascinating and potentially very important study has recently come out in the journal Science. The study reports on the discovery that 68% of patients with Chronic Fatigue Syndrome (CFS) carry the XMRV virus as compared to 3.7% of those without CFS. Further work reported in the New York Times indicates that the virus has been found in 98% of patients with CFS. The discovery of this retrovirus, if confirmed by other research groups, suggests that this virus is either the cause or an important secondary factor in CFS.
This finding has implications for Lyme research as it is possible that patients who carry this virus when co-infected with Lyme go on to have persistent symptoms because: a) of activation of the latent virus; b) infection with Lyme or another tick-borne disease lowers the immune surveillance making the individual more susceptible to "catch" the virus; or c) the presence of the virus and the spirochete together act synergistically to induce an array of illness symptoms or to prevent eradication or control of either organism.
In any case, given that the symptoms of CFS are so similar to the symptoms of patients with chronic persistent Lyme symptoms, especially shared problems with fatigue and cognition, research in this area may shed important light on the mechanisms underlying the perpetuation of chronic symptoms.
In terms of treatment, if this virus is thought to be causal, then retroviral treatments that are used for treating HIV may be very helpful for patients with chronic persistent symptoms.
The featured news section found in the web site of the Lyme and Tick-Borne Diseases Research Center at the Columbia University Medical Center article adds, confirms and enhances the efforts of P.A.N.D.O.R.A. and the Lanford Foundation that the establishment of the NEI Center in New Jersey is the RIGHT THING TO DO. ...
"The cornerstone of the NEI Center is that discoveries and advances made in any one of the neuroendocrineimmune illnesses: chronic fatigue syndrome (CFS), myalgic encephalomyelitis or encephalopathy (ME), fibromyalgia (FM), Gulf War syndrome/illness (GWS/GWI), multiple chemical sensitivity (MCS), environmental illness (EI), chronic or persistent Lyme disease (CLD-PLD), Alzheimer's Disease (AD), and autism, will be applicable and beneficial to other neuroendocrineimmune illnesses, thereby bringing us closer to a cure."
Posted by Bugg (Member # 8095) on :
Thanks Bugg!
Posted by sparkle7 (Member # 10397) on :
One doctor says that he can cure people with AIDS by taking selenium, NAC, L glutamate & l tryptophane.
I tried it for a month but didn't feel any better. He says it should work in about 3 weeks.
I haven't had any tests, etc. Just thought I'd give it a try...
The other thing to look into is what boosts NK cells...? If the NK cells are boosted will is cause a negative effect with the cytokines?
I've been looking into a special rice bran - MGN-3, AHCC, medicinal mushroom blends (like Host Defense), transfer factor, whey, ProBoost, resveratrol...
Any others?
Posted by ibrakeforticks (Member # 6785) on :
Has XMRV been described as a TBD yet?
When these XMRV doctors discuss transmission (vertical transmission from mother to fetus, blood transmission through blood transfusion, etc.), have any of them suggested that XMRV might be transmitted like Lyme is, by ticks?
Maybe I'm off-base, but it seems quite obvious: how does a mouse virus infect humans, if it's not airborne? It must be via ticks or fleas (which then jump onto the housecat, then onto the human...). Probably a number of Lyme patients got infected with XMRV at the same time they got infected with Lyme et al.
Posted by peter j (Member # 11825) on :
Lyme et al. - funny comment. @ibrakeforticks, yes, I think so. Perhaps you should suggest to Mikovits that they check some ticks for XMRV? I guess ticks are some of the easiest 'bugs' to test, because they have so much blood when they are done sucking...
Posted by ibrakeforticks (Member # 6785) on :
Yeah, and perhaps our LLMD's should suggest that to Mikovits. I think they owe us nothing less, since this may help explain the significant number of Lyme patients that don't improve with endless antibiotics.
Or how about this. Take a mouse, test it for XMRV (Mikovits said 95% of mice carry it, right?). Let some fleas and ticks have at it. Then test the fleas and ticks for XMRV. Simple.
Posted by Myco (Member # 9536) on :
I'll say it again. Most Lyme patients are testing negative for XMRV according to both lab polls. Just google XMRV and you will find the message boards with the polls.
Posted by Bugg (Member # 8095) on :
1) I thought Dr. Mikovits said several times in the video that XMRV is NOT from a mouse. It's my understanding that a similar derivative retrovirus was once found in mice. Maybe I misunderstood???
2) From a personal standpoint, I am more excited about XRMV for the chronic lyme community because I hope it will bring a better understanding of the immune systems and inflammatory systems of chronic lyme patients. There is soooooooo much money being poured into studying this retrovirus. Do I think all people with chronic lyme have XMRV??? Absolutely not. However, I'm hopeful that the studies of this retrovirus and how it relates to mitochondrial dysfunction, fatigue, pain...etc...will help lyme patients....
3) Finally, I think it might be worth taking a second look at some of the supplements Dr. Mikovits mentioned to help aid people with retroviruses (HIV...XRMV)... She mentioned these people are under intense oxidative stress and often have low NK activity. I would be shocked if chronic lyme patients were not under intense oxidative stress. We know so many of us suffer from intense fatigue and pain....
Maybe we should, as a group, re-examine the best ways to raise glutathione as Dr. Mikovits suggested (taking NAC or whey protein)....taking immune support systems that raise NK cell activitiy when NK cell activity is low.....(I just restarted Xymogen 2000 given to me by my LLMD)....What about the role of Vitamin D???... What about anti-inflammatories.....
Alot of the HIV docs suggest taking glutatmine, NAC or whey protein, ALA, and Vitamin C.....
I would love to hear your thoughts on this....
Posted by ibrakeforticks (Member # 6785) on :
Speaking of raising glutathione, check out this methylation block theory/program developed by Rich Van K....
Some people seem to be able to lift this block and raise glutathione just with 5 simple supplements...
Posted by ibrakeforticks (Member # 6785) on :
Sorry, I was wrong; I guess she said XMRV is not in mice, it's a different virus.
But then later in the talk (the transcripts are available now), she says:
"So how does XMRV enter the human population? Is it a zoonotic [from animals] transmission? We know its not a mouse, at least not any of the mice we know. It could be a field rodent of some kind, but we've never found the virus in another animal. This is the first animal that is the ``Xeno'' and that is man. So how does it enter the population and when did it enter? What's the worldwide incidence of XMRV disease that should say or prevalence of XMRV. Where is it? Is it in England, in Europe, at what level? We know it's 1.7% in Japan because of a study done earlier this summer."
So it appears she does think it could be present in a "field rodent," and asks the question of how it enters the human population. That would seem to open the door for the possibility of insects carrying the virus from the field rodent to the human. Or maybe I'm wrong again.