Article: Dr. Mikovits Talks! The XMRV Santa Rosa Lecture: Part II by Lannie

You can view the page at http://forums.aboutmecfs.org/content.php?337-Dr.-Mikovits-Talk!-The-XMRV-CFS-Santa-Rosa-Lecture-Part-II-by-Lannie

 

That is an astonishing increase in cytokines and chemokines in XMRV infected people....Reduced subset of cytotoxic NK cells, reduced NK cells overall - this sounds very much like CFS - except those cytokines are off the charts....

Fascinating that Rituxian is showing up here as well.

Love to hear her confidence.....It has never wavered...Here's to everything clearing up shortly...Wouldn't that be something.

 

Just marvellous to read Cort - many thanks. A joy to see how the WPI research speeds along now.

 

"I think the politics will go away shortly."

I can't wait for the GMA to post the video to hear her say that! Thanks Lannie.

 

She first discussed how the restoration of glutathione would reduce stress on XMRV patients remarkably. Next, she covered the need to restore and or improve methylation. She suggested methofolate in B12, and specifically mentioned supplements called Deplin and Cerefolin NAC.

I'm sure Rich loved to hear this....as a supplement to ARV's. I'm sure some of these patients must be trying them - they're easy to get and I wonder if their results are any different. I think the overall treatment message with this small group of people with ARV's is that they don't have anything really good at this point If you're going off into stem cells, GcMaf (which I know nothing about it - I assume that it's new?) you're getting into new and untested therapies (?).

It's interesting that she put that GcMaF is the one that they think may get into those reservoirs - it must have some characteristics that allow it to get into the brain???

I would think Ampligen would be a big help. She noted, though, that it reactivates the viruses - I guess they can see them showing up more (using new viral load test?) in patients. I imagine Hemispherx is looking at this closely...monitoring their immune factors as they are on it.

Hopefully "when the politics goes away" and XMRV is resolved and the physician is announced and the money starts flowing in they can do the treatment trials and get alot of people in there and start trying different things in an organized fashion and find out what works. I'm sure they are just itching to do that.

That is a real gift of the WPI - a merged research/treatment facility that can do these complicated trials in a rigorous fashion and publish them and get the data out into the scientific literature. We are so missing that! We have great physicians but they're largely missing the ability to translate their results into meaningful studies....The only people who are doing that, for the most part, are the CBT people

I guess there aren't any other ARV drugs that do not focus on replication that might be useful?

 

I take it that populations of clonal T-cells are also found in people with autoimmune disorders - another intriguing autoimmune connection. I have to say one thing is REALLY frustrating. Dr. Peterson has been talking about these clonal T-cells at meetings for several years now. This is apparently an eye-opening finding - yet it has never shown up in the literature! Where is the paper that demonstrates to the world that a subset of people with CFS have this unusual and apparently rather dangerous (?) immune finding.

Hopefully that will come out. Dr. Peterson, from what I hear, works like a dog with his patients but the WPI is built, with its research and treatment end, to get this stuff out. Hopefully as they get everything settled they can start doing that. I do recognize they have another small issue to deal with - XMRV ..but besides XMRV they have other intriguing findings - there's the cancer cluster, there are those pathogen arrays they've been doing or years.....there are what appear to be real gems, at least to me, that will hopefully get out... I recognize they can only do so much...

 

This practice started testing its neuroimmune patients and soon found they were treating XMRV positive patients with CFS, Fibromyalgia, Chronic Lyme Disease, Multiple Sclerosis, Parkinsons Disease, ALS, the list goes on.

On the one hand it's good, it's very good that this are all central nervous system diseases - you can say this is a CNS disease causing pathogen - so that would make sense. If it starts showing up frequently in people with, say, kidney problems or heart failure or glaucoma or things like that then you have some other issues to deal with. Having XMRV show up in a fairly clearly defined group of disorders will be important IMHO. From this list it sounds like it is...... except that the practice said they were testing their neuroimmune patients - they apparently haven't been testing their non-neuroimmune patients. That is the next key test.

 

If you test negative, they are not able to confirm it is absolutely negative. Until there is further understanding of the XMRV lifecycle, they can not confirm this.
. . . .
You “never see these in healthy people!” exclaimed Mikovits. She stressed how the positives and negatives are SO CLEAR.

Maybe Lannie or Cort can help me understand this. If WPI cannot confirm a sample is truly negative, then the Blood Working Group study is completely useless. But on the other hand, Dr. Mikovits seems to be completely confident in the negative results of testing of healthy people. This reads like a contradiction - either the positive/negative results are clear and reliable, or they are not. I don't understand how it can be both. Can anyone help me out?

Mikovits noted “especially the sickest, get negative antibody response, but positive culture.” I’ll cover treatment later, but she also noted that once some of these especially sick patients went on antiretrovirals they were able to create an antibody response. Prior to, their systems were just too weak. Creating an antibody response would cause the patient to then also report positive on serology.

I don't understand this either. Is Dr. Mikovits saying that patients cannot make antibodies to XMRV only? Or that a severely ill patient cannot make antibodies to lots of pathogens? The latter would suggest an AIDS-like presentation with the immune system completely unable to do its job. I know we have lots of co-infections, but that's different from an immune system unable to function by making antibodies. If Dr. Mikovits is saying patients can't make antibodies to XMRV alone, why would that be? Do they understand the mechanism for why the immune system would be unable to mount a response to one pathogen but not others?

 

thanks cort and lannie for getting this great info to us all. I know Dr. M was just postulating but does anyone understand why it would be advantageous for XMRV to replicate more - I know the ARVs can prevent new infectious virus particles from entering new cells this way, via reverse transcriptase and integrase inhibition, but if we have XMRV replicating as little as possible in the first instance then these cells won't get infected either way with the presence of ARV's.

Or is this some kind of theory that this will mutate XMRV out of existence? But you would still have a problem with all those cells that have already been infected, many of which especially in the CNS/Brain will last for a long time if not a lifetime. Therefore these cells will forever express XMRV induced pathology until they under go apoptosis.

It seems akin to taking HAART/ARV's and then exposing the body to high doses of DHT/Progesterones etc. to increase expression and replication of the virus to like three fold. I was under the impression that these hormones are generally detremental for XMRV+ people.

Jake

 

Hi, Cort.

Yes, I am very happy to see these things coming together! As I have been posting lately, it makes a lot of sense from biochemical and genetic standpoints that oxidative stress, glutathione depletion, and a methylation deficit would be connected with the retroviruses. Some sort of combined treatment does seem to make sense to me, too.

A small point: I think there is an error in the transcription of what she must have said (I wasn't able to be there). I think she must have said "methylfolate and B12" rather than "methofolate in B12." Methylfolate (or 5-methyl tetrahydrofolate, aka 5-MTHF, Metafolin, FolaPro, MethylMate B, and Deplin) is one of the key supplements in the methylation-type treatments, of which there are now several being used. B12 is the other most important component.

Note that she specifically mentioned the prescription "medical foods" Deplin (listed above) and Cerefolin. Cerefolin is actually Cerefolin-NAC, and it contains
methylfolate, methylcobalamin (the methyl form of B12), and N-acetylcysteine or NAC. Conventional physicians are more likely to use these, because they are FDA prescription treatments. The same ingredients are available over-the-counter, probably at lower cost, but the prescription treatments may be covered by insurance if the doctor is able to specify an appropriate code for the diagnosis. Deplin contains 7.5 milligrams of methylfolate, which is a very big dosage compared to the few hundred micrograms we have been using for ME/CFS treatment, and a dosage that large could cause some strong detox symptoms.

It's interesting to note that Cerefolin-NAC and the methylation treatments in general are still running fairly high on the average effectiveness ratings at the crowd-sourced CureTogether site, though they have dropped back some in the rankings: http://www.curetogether.com/chronic-fatigue-syndrome/treatments/
I think the factor that keeps them from rising even higher in the rankings is the detox symptoms they provoke. When some of the people find these intolerable, they tend to stop the treatment, and report that it made them worse. I can certainly understand this response. How is a person to know whether it is going to help them eventually, if it makes them worse initially? However, people who have lowered the dosages and stuck with the treatment have mostly had good results.

More information on the methylation treatment is available at www.cfsresearch.org by clicking on CFS/M.E. and then on my name, or by going to your site at http://www.aboutmecfs.org/Trt/TrtGSHIntro.aspx

With regard to gcMAF, I would refer you to thread on that here on the forum. This is sounding very promising. Dr. de Meirleir is reporting good results with it, and Dr. Cheney is moving in that direction now, too. Basically, it involves modifying a protein found naturally in the body and putting it back in. The gc protein is the vitamin D receptor protein. With a couple of modifications, this protein acts as the main activating factor for the macrophages, which are the "big swallower" white cells of the immune system. Using gcMAF (discovered by Yamamoto) is a way of inducing the person's own immune system to go after pathogens and tumor cells. It has been used in prostate cancer and in HIV, to good effect. It's difficult to get this treatment in the U.S. at present, but I understand that efforts are being made to change this. If this treatment continues to work as well as has been reported, I think it has the potential to be used for other diseases beside those treated so far. This could be a very big thing.

Thanks to Lannie and to you for this report.

Best regards,

Rich

 

This suggested link with ALS, MS etc. is something I am not optimistic about. Although I'm sure it is possible, it seems highly unlikely that just XMRV would create all these diseases. It is quite a stretch to make this link. And then it seems we would have the problem of transmission through sex or blood transfusions for all these illnesses, and I don't think that is happening.

It is also disturbing to see references to oxidation, methylation cycle, NAC, B12, treating co-infections etc. as a major component of treatment. These ideas have been floating around for years and I don't see any change in CFS treatment or prognosis. We need evidence of a heavy-hitting drug that works. Maybe it will never be found, but that is what it will take--you can't supplement your way out of this disease even if it may help a little around the edges.

I would have had a different take years ago, but I've seen and experienced the results based on supplementation, glutathione and treating lyme and various viruses.

The one good thing I can say is that at least they are not only looking at XMRV but immune dysregulation--maybe something useful will come of that.

 

I don't understand this either. Is Dr. Mikovits saying that patients cannot make antibodies to XMRV only? Or that a severely ill patient cannot make antibodies to lots of pathogens? The latter would suggest an AIDS-like presentation with the immune system completely unable to do its job. I know we have lots of co-infections, but that's different from an immune system unable to function by making antibodies. If Dr. Mikovits is saying patients can't make antibodies to XMRV alone, why would that be? Do they understand the mechanism for why the immune system would be unable to mount a response to one pathogen but not others?

I am curious about this as well. I have tested positive via culture multiple times, but my one serology is negative. My body has no problem making antibodies to pretty much any other pathogen, so I'd like to hear a mechanism for why it wouldn't make them for XMRV only.

Also, as encouraging as the results are that they are finding it in other neuroimmune diseases, it makes you wonder how common it really is. If they start finding it everywhere it raises the possibility that something is going wrong in the testing and is showing false positives, or that its a virus that reactivates in most "sick" (of any cause) people, but perhaps not the cause.

Anyways there is some good info in this presentation. Thanks for the report. I hope they figure this out soon.

 

I take it that populations of clonal T-cells are also found in people with autoimmune disorders - another intriguing autoimmune connection. I have to say one thing is REALLY frustrating. Dr. Peterson has been talking about these clonal T-cells at meetings for several years now. This is apparently an eye-opening finding - yet it has never shown up in the literature! Where is the paper that demonstrates to the world that a subset of people with CFS have this unusual and apparently rather dangerous (?) immune finding.

Cort, I hadn't heard they show up in autoimmune diseases. Do you have a link? I know that in some cases they are an early marker for cancer. But the autoimmune connection would be interesting...

 

It is also disturbing to see references to oxidation, methylation cycle, NAC, B12, treating co-infections etc. as a major component of treatment. These ideas have been floating around for years and I don't see any change in CFS treatment or prognosis. We need evidence of a heavy-hitting drug that works. Maybe it will never be found, but that is what it will take--you can't supplement your way out of this disease even if it may help a little around the edges.

In a way their stating that these things are helpful makes perfect sense - since they do seem to be helpful for some people with CFS. On the other hand, I agree that it's a bit disappointing, since they don't seem to be curative. I was hoping for some exciting other avenue....another type of ARV....

I don't know what to think about stem cells and the others...On the one hand I wince a bit when I see these controversial treatments in the same sentence as CFS - since that seems to be our history? Everybody is looking for the way out and these are latest hot items....I would have loved to have heard that some tested and true pharmaceutical drug was an option On the other hand there is some anecdotal evidence from Dr. Cheney and Dr. DeMeirleir that they are helpful.

Again, one of the WPI's gifts is that it should be able at some point to kind of methodically plough through these different option. How much does methylation help? Are stem cells a viable option? Note that they have started to do that in a limited fashion...That one release on ARV effectiveness has more quantitative data (or at least as much) as Dr. Cheney has put out with his stem cell patients, I believe.

The site Rich pointed out is another way to do that and PR is working on its own treatment review program. We really need data!

 

It is also disturbing to see references to oxidation, methylation cycle, NAC, B12, treating co-infections etc. as a major component of treatment. These ideas have been floating around for years and I don't see any change in CFS treatment or prognosis. We need evidence of a heavy-hitting drug that works. Maybe it will never be found, but that is what it will take--you can't supplement your way out of this disease even if it may help a little around the edges.

I would have had a different take years ago, but I've seen and experienced the results based on supplementation, glutathione and treating lyme and various viruses.
.

Hi, pine108kell.

I'm sorry that you find this disturbing. I actually find it encouraging. It's clear that these things are not the total answer. I think we can agree on that. But there is a lot of evidence now that treating specifically to lift the partial methylation cycle block, which brings glutathione up automatically and lowers oxidative stress, is a significant benefit to many PWCs. Perhaps the reason, or part of the reason at least, is the effect this treatment has on the retroviruses.

We both go back quite a few years in the CFS internet groups, and we've both seen various attempts to raise glutathione, which were only partially helpful for most PWCs. I don't know if you are aware of the treatment of the methylation cycle partial block, which is an advance over direct attempts to raise glutathione, which started with Dr. Cheney back in the late 90s. We now have a treatment to bring glutathione up in a more permanent way. This came about starting with the work in autism by S. Jill James et al., published in 2004.
We finally found out what was holding glutathione down, and it is now possible to bring it up more permanently. So if your view of the glutathione situation is based on the earlier approaches that were not successful, I would recommend that you take a look at the newer approach. See www.cfsresearch.org and click on CFS/M.E. and then on my name. Read the more recent entries first.

Best regards,

Rich

 

Hi, pine108kell.

I'm sorry that you find this disturbing. I actually find it encouraging. It's clear that these things are not the total answer. I think we can agree on that. But there is a lot of evidence now that treating specifically to lift the partial methylation cycle block, which brings glutathione up automatically and lowers oxidative stress, is a significant benefit to many PWCs. Perhaps the reason, or part of the reason at least, is the effect this treatment has on the retroviruses.

Best regards,

Rich

Hi Rich and others,

Just anecdotally.....I followed the simplified methylation protocol for a couple of years and noticed quite a bit of improvement. I had to suspend it for a while due to detox issues.

I have worked on detox in other ways and decided to try the methylation supplements (at low dose) again. I am leaving tomorrow to see KDM in Belgium and wanted to be working on methylation while undergoing other treatments for XMRV.

I now find I can tolerate the supplements again and they have actually helped me with the stamina necessary to prepare for international travel. True, no one easy answer, but working with several approaches may bring benefits.

Best,
Sushi

 

Maybe Lannie or Cort can help me understand this. If WPI cannot confirm a sample is truly negative, then the Blood Working Group study is completely useless. But on the other hand, Dr. Mikovits seems to be completely confident in the negative results of testing of healthy people. This reads like a contradiction - either the positive/negative results are clear and reliable, or they are not. I don't understand how it can be both. Can anyone help me out?

That is a gooey issue! With the BWG I imagine they are thinking - this is a sample if from a healthy person and it's been tested and we will assume that it's negative because the chances of it being positive, after multiple tests by multiple labs, including culturing are very low.

Some researchers pointed out a similar issue showed up in the Science paper where it appeared that the WPI retested people with CFS in their attempt to find the virus but did not retest the healthy control samples. They assumed a negative control was a negative control but a negative patient might be a postiive - so they retested some patients several times - thus trying harder to find the virus in them.

On the other hand, they are assuming that a positive is always positive. If you have an antibody result you are positive or if you have a positive culture result you are positive. In the final analysis - my understanding is that every pathogen needs multiple positive tests to be confirmed and they are just requiring one. In the WPI's defense we're just not at that point yet - the science obviously has not evolved to the point where you know just which two or three tests you need to run to check the others.

This is all part of the diagnostic mess that is XMRV at this point. The WPI has been very confident in their results.

 

Cort, I hadn't heard they show up in autoimmune diseases. Do you have a link? I know that in some cases they are an early marker for cancer. But the autoimmune connection would be interesting...

I took that from this

Rituximab is used in the treatment of many lymphomas, leukemias and transplant rejection. It has also been used off label for numerous autoimmune disorders such as Rheumatoid Arthritis, Multiple Sclerosis and Lupus to name just a few. The last note is very important, XMRV infected patients have clonal populations of gd T-cells. This is important, as look at the next slide

but perhaps I jumped too fast...Rituximab treats both cancer and autoimmune disorders. Maybe she was referring to the cancer side of it....but here is something

http://archderm.ama-assn.org/cgi/content/full/145/10/1164

Here's another:

Clonal expansions of CD4+ B helper T cells in autoimmune myasthenia gravis
Bjrn Tackenberg1, Jens Kruth1, Johanna E. Bartholomaeus1, Kerstin Schlegel1, Wolfgang H. Oertel1, Nicholas Willcox2, Bernhard Hemmer3, Norbert Sommer1,*

I don't know if it's the same clonal T-cells or not.....way over my head here

 

These are great questions. People are too credulous of the claims at this point imo.

Maybe Lannie or Cort can help me understand this. If WPI cannot confirm a sample is truly negative, then the Blood Working Group study is completely useless. But on the other hand, Dr. Mikovits seems to be completely confident in the negative results of testing of healthy people. This reads like a contradiction - either the positive/negative results are clear and reliable, or they are not. I don't understand how it can be both. Can anyone help me out?



I don't understand this either. Is Dr. Mikovits saying that patients cannot make antibodies to XMRV only? Or that a severely ill patient cannot make antibodies to lots of pathogens? The latter would suggest an AIDS-like presentation with the immune system completely unable to do its job. I know we have lots of co-infections, but that's different from an immune system unable to function by making antibodies. If Dr. Mikovits is saying patients can't make antibodies to XMRV alone, why would that be? Do they understand the mechanism for why the immune system would be unable to mount a response to one pathogen but not others?

 

i have to say though i do find these treatment 'options' a tad disappointing. we have known all this information about glutathione and the methylation cycle for quite some time now and although when i took folinic acid, liposomal reduced glutathione and methylcobalamin (I/M) for around 6 months i felt an improvement in cardiac symptoms, most probably due to reduce homocysteine? i still did not see much of a change in energy physical or mental. i mean how long does one need to go on the methylation cycle treatment to see a marked change in this disease process and is dr. mikovits saying adding in ARV's with the meth. cycle components will enhance efficacy?

i am shocked tbh because i cannot see taking all those supplements again really doing much. I am on ARVS right now (Tenofovir and AZT) that has done nothing for my symptoms, so are they suggesting a much more powerful synergistic effect when these two components are combined??

Please some one explain i am so confussssssed :S