Dr Mikovits' XMRV treatment options: which possible now in UK?

[Sasha]

Paula Carnes gave a summary of Dr Mikovits's 17 January talk on her blog, reproduced with permission by Cort on Phoenix Rising here.

It includes a summary of treatment options covered by Dr Mikovits for people who are XMRV+, pending further research. Dr Mikovits isn't a clinician of course but she presumably knows what makes sense on a theoretical level.

I have two questions:

(1) for those of us in the UK, are any of these options available under medical supervision (whether NHS or privately) and if so, how and where?

(2) are any of the options both safe and possible without a doctor? I'm assuming whey protein is, for example - it doesn't need a prescription and I'm assuming it's safe unless you have an allergy or intolerance to it in which case you would just stop.

Here are the options reported by Paula (thanks, Paula!):

• What can we do to treat? If you test positive you may want to get an AIDS specialist to prescribe a triple combination of antiretrovirals: AZT, raltegravir, tenofovir. Dr. Joseph Brewer is finding his patients with XMRV are showing 20% improvement on these anti retrovirals.
• If you don’t want to take those yet, even though they are very safe under a doctor’s supervision, you can do some things a lot of us have already found helpful, namely boost the immune system and treat co-infections.
• Antibiotics for Lyme disease infections may be help. Antivirals for HHV6 and EBV may help.
• In Japan there was an epidemic of HTLV-1. Stopping breastfeeding stopped the epidemic.
• Taking anti-inflammatory drugs will reduce the replication of XMRV. If you can reduce inflammation and lower cortisol you will reduce XMRV. [This could explain why some of the natural treatments have helped CFS patients including meditation and deep breathing.]
• Potential treatments, for now, include reducing oxidative stress, increasing methylation and raising glutathione levels. [Now we see why nondenatured whey protein and B vitamins help.]
• Valcyte, Valtrex and Ampligen may reduce viral co-infections.
• If a patient has Lyme the treatment must include treatment for Lyme and XMRV.
• Dr. DeMeirleir is experimenting with GcMAF to treat XMRV infected patients. This makes sense as GcMAF is an immune modulator used to treat AIDS and certain cancers. Google it. It can only be purchased in Europe at this time.
• Stem cell therapy may be helpful in the future.
• Simple things you can take now that might help include Deplin (a medical food prescription) and N–acetyl cysteine or NAC.

Like a lot of people I haven't yet been tested for XMRV (I'm waiting for a more sensitive & specific test) but don't want to wait years for the NHS to get moving on this while my health declines further. If possible, I'd like to start some relatively safe things that might help if I am actually XMRV+.

 

[free at last]

Thanks sasha i will read more about this soon.

 

[ukxmrv]

Sasha, sorry to harp on about the whey protein. As you know I had a bad reaction to it. The reaction was not due to an known allergy or an intolerance. The reaction was severe and long lasting. I've also reacted to other supplements roughly included in the Glutathione/ Methlyisation theory area. For me it comes under the "old ME treatments" area of things we have used or tried for years with varying responses in patients.

We had one thread from a XMRV+ person in London, UK who did obtain ARV drugs on this forum. They haven't posted lately but from what I remember they didn't have success and didn't post very much sadly.

Most XMRV+ people I know are either being seen at the Breakspear or travelling to see DM in Belgium. I'm not aware of any XMRV+ being treated on the NHS with drugs for XMRV. Most of us are either travelling to see doctors or buying drugs using the internet to try ourselves. I'm not aware personally of any XMRV+ person in the UK (apart from the poster mentioned prev) who has tried ARV's as mentioned by Dr Mikovits.

For me, nothing is "safe" as I learned with the Whey protein. Yes, we can stop taking unsafe things but the bad results can last for weeks/months and if one keeps trying different things it can get worse and worse with health dropping each time. Years can pass by like this and have done so for me.

Hope that helps. We are still struggling badly in the UK / Europe and have few doctors who will treat us.

Dr KDM seems to be the most aware of the drugs/supplements Dr Mikovits mentioned in her talk. Search this forum for threads on UK XMRV+ visiting him as they talk about GCMAF use there and all the other treatments he offers.

XMRV+ in the UK

 

[Enid]

Thanks very much for posting Sasha - as you know we are in the woods (can't travel) so WPI advice has me back to the drawing board now on best supplemental aids (over and above Thyroxine and Osteoporosis treatment prescribed). Frankly any theory from Dr Mikovits I'd take blindfold - she is the very best.

 

[justy]

Hi Sasha, i was reading a bit about this on the article from the lannieinthelymelight blog. It was interesting to hear her talking about Glutathione and oxidative stress and methylation. I have been thinking about this for a while and ehilst i havent done the methylation pathways panel test i have had mito testing done with Dr.Myhill here in the U.K which showed for me high levels of oxidative stress and very low Glutathione levels. For me at the moment the metylation protocol looks the best and safest way to support health at the moment without needing NHS support.
I also havent been tested for XMRV as in the U.K. I was waiting for a better/nearer/cheaper test and at the moment i cant do anything even if i were to be positive. Although i am becoming impatient and thinking about doing the test anyway.

 

[cigana]

Hi all,

My view regarding the XMRV testing is that I think it's failry safe to assume we all have XMRV so long as we satisfy the Canadian criteria. It seems as the tests get more advanced, a greater percentage of PWC's test + (and we might end up needing tissue tests).

The question for me is what will our doctors do if we present them with + test results? I can't believe in the current climate anything!

I know at St. Mary's in London, they have ordered extra immune tests for some of those who are XMRV+, perhaps over the next year or two they may be persuaded to prescribe ARV's if we beg. I would also like to know Dr W's thoughts on ARV's.

For me personally it is too soon - I will concentrate on methylation, natural immune modulators (Simba, Pine Kernal Extract etc), LDN and antibiotics.

Cig

 

[Mark]

Thanks Sasha, good thread!

(btw, I've been meaning to say: "Fine, thank you" - :Sign Good one

For me, I'm concentrating on all the easiest and cheapest of these options, for the moment, which means anti-inflammatories, stress management, B12, and the dietary measures I've already identified. I think circumin was mentioned at one stage (a little surprised that's not in the list above), but I haven't got round to sourcing that yet.

The recognition that stress, inflammation, and hormone levels are 3 major triggers for XMRV replication, is massive, for me. Those observations - confirmed by the science of XMRV - are extremely consistent with many of the observations about the relapsing/remitting nature of ME, and consistent with many of the treatment strategies people have found to be successful. So I see this evidence as very supportive of many existing treatment and management options, and it all gives me a much more solid way to put together all the observations I've made over the years into an overall theory that makes excellent sense.

As far as advanced modern treatments like anti-retrovirals, immune modulators, and stem cell therapy are concerned, I see them as powerful pharmaceutical tools that are in an experimental stage, and for me personally, I'll be waiting for good evidence about their effects before experimenting myself. But I am nowhere near as ill as I used to be, and there are many people who are much more seriously ill than myself and who have never managed to get out of the hole using these other treatments, so if I were in their position, I guess I would be tempted. I do believe we should all have the right and the freedom to make informed personal choices about these options, and to choose to be 'human guinea pigs' for treatments if we wish to do so, and I have huge admiration for the bravery of people like Dr Deckoff-Jones who have taken personal risks in a way which benefits the wider community.

I liked this quote, because it does illustrate the reason why people like Cort have had some success with 'mind-body' techniques:

If you can reduce inflammation and lower cortisol you will reduce XMRV. [This could explain why some of the natural treatments have helped CFS patients including meditation and deep breathing.]

It's a great shame, but the subtleties of what is meant by "mind/body" techniques cause huge controversy for no good reason. The knee-jerk reaction we sometimes see against anything that hints at the psychological is very counter-productive. One of the most insidious effects of the psychosomatic theoreticians is that their approach has led to a situation where many long-term ME sufferers are so primed against anything that sounds psychological that they refuse to entertain any techniques that are seen as psychological rather than physical. In doing so, we allow Wessely et al to corrupt the entire field for us and deny ourselves access to techniques that can be very helpful.

And yet now the science of XMRV makes it quite clear that reducing cortisol will be helpful for physical reasons, and that therefore meditation and other stress-management techniques will inevitably be effective for many people. There ought to be nothing controversial about saying that, but sadly our political environment has become so charged that it's become a taboo subject. Sorry if I'm a bit off-topic for mentioning it here, but I think Cort's very brave and honest in talking about that subject here, and I see it as another part of the fightback against the effects that psychosomatisation theory has had on our community: we should reclaim that particular baby that we threw out with the bathwater, and allow ourselves to access anything that can help us practically, however incomplete that help may be.

 

[Sasha]

Thanks, UKXMRV - I don't think I had properly absorbed what you said on the whey protein thread, sorry! It's useful to have your warning about it here.

I hadn't heard of the Breakspear - for anyone else not familiar with it, here's the Breakspear site. They're a private practive based in Hemel Hempstead in Hertfordshire.

 

[Enid]

If anyone here can follow the very best in understanding/totally up to date with the latest research - follow it.(Check all others out first before big sums paid I'd advise). Dr Mikovits and Phoenix Rising a wealth of information.

 

[ukxmrv]

Mark,

I had the opposite reaction about the cortisol comment. My cortisol is very low so reducing it further isn't an option for me. So many CFS studies do show low cortisol in CFS patients. The mind/body connection in that way therefore loses it's importance to CFS and XMRV.

It's not "throwing the baby out with the bathwater" if there is no baby in the bathwater to start with.

Personally, I really do not care what helps or cures me. I've tried therapies of all kinds. I'll even drink my own urine if it helps

however, I don't want to keep trying all the things that didn't work for me, over and over again.

XMRV+

 

[Sasha]

There's some (non-UK specific) discussion of this on another thread which is also interesting, based on someone else's summary of the same meeting, here.

 

[Jenny]

Hi Sasha

In reply to your question about what treatments are available in the UK:

The Breakspear offers abx (oral and IV), antivirals, IV glutathione, and IV methylcobalamin and leucovorin (for methylation). The abx haven't helped me though, and I've been taking them for nearly 3 years.

I've managed to get abx and Valtrex from one of the so-called 'Fatigue' Clinics. (The Valtrex was a private prescription though.) Also had B12 injections for a time from a haematologist (didn't help).

Jenny

Jenny

 

[illsince1977]

Mark,

I had the opposite reaction about the cortisol comment. My cortisol is very low so reducing it further isn't an option for me. So many CFS studies do show low cortisol in CFS patients. The mind/body connection in that way therefore loses it's importance to CFS and XMRV.

It's not "throwing the baby out with the bathwater" if there is no baby in the bathwater to start with.

Personally, I really do not care what helps or cures me. I've tried therapies of all kinds. I'll even drink my own urine if it helps

however, I don't want to keep trying all the things that didn't work for me, over and over again.

XMRV+

I'm with you UKXMRV. Low cortisol already, so lowering it seems therapeutically useless, possibly even harmful. Maybe the low cortisol is protecting our bodies from further damage from XMRV, maybe not. No one knows, yet.

Been there, done that with most of these suggestions! Tired of hearing the "same old, same old" that mostly only works for/applies to a few; a limited number of successful cases get amplified way out of proportion. In addition, those "successes" are not followed for any length of time to ascertain the success was sustained. Doctors/practitioners/theoreticians pass this along as "this helps patients," sometimes based on no more than 1 person out of hundreds having some positive response, no matter how small or how brief, and we're off to the rumor mill races!


In case anyone thinks we "old timers" are just being sourpusses about it, it takes a tremendous toll on us to

1. constantly seek the next "remedy"; research it; weigh the theoretical benefits against our own case possibly with expensive tests that we discover after the fact their interpretation was based on one person's insubstantial "theory"
2. get our hopes up that this one will be the one that will help
3. buy it, try it
4. keep taking it even though it seems to be harming us because we've been persuaded by the "prevailing wisdom" that this thing is "good" for us
5. finally realize we should get off it already; enough harm's been done and wondering how long will it take to recover from this new insult to our bodies
6. deal with the disappointment of yet another remedy not being "it" and realizing hope has just dwindled by one more
7. being disillusioned that "experts" and others wisdom/experience isn't of much value to us
8. feeling somehow defective because we (obviously! - at least that's the message practitioners and others convey when they don't share with us the many other failures) are the only one who doeesn't seem to derive benefit.
9. reclaim our sense of self worth and get over the disappointment/depression in addition to getting through the day in pain and debilitating exhaustion.

I think everyone should keep in mind that Judy Mikovits is not a clinician and she would be the first one to remind us of that. That's not to say that recommendations based on observations she has made in the lab might not be beneficial for some. I understand the sentiment of wanting to do something instead of nothing, but that doesn't necessarily mean there is validity in these suggestions. Nor does the caveat "Might as well! What have you got to lose?" really apply, as I explained above.

 

[Sasha]

(btw, I've been meaning to say: "Fine, thank you" - :Sign Good one

Thank you! It seemed appropriate...

I think circumin was mentioned at one stage (a little surprised that's not in the list above), but I haven't got round to sourcing that yet.

There's a whole thread on curcumin here and several people have mentioned a curcumin product called Enhansa (also discussed on that thread).

 

[Sasha]

Just wanted to thank everyone for the replies on this thread - all so interesting!

Having had ME for 25 years I'm very familiar with the pain of trying to keep up with developments in treatment, trying expensive stuff and finding (at best) no benefit. I suppose we will only know when we moved into the good stuff in retrospect!

Our situation at the moment is new, I think - there seems pretty good evidence that it's all about XMRV and if it is, we ought to be able to use scientists' knowledge about retroviruses to narrow down better on what should work. But the XMRV story is not conclusive yet and there are so many ifs.

 

[richvank]

I'm with you UKXMRV. Low cortisol already, so lowering it seems therapeutically useless, possibly even harmful. Maybe the low cortisol is protecting our bodies from further damage from XMRV, maybe not. No one knows, yet.

Been there, done that with most of these suggestions! Tired of hearing the "same old, same old" that mostly only works for/applies to a few; a limited number of successful cases get amplified way out of proportion. In addition, those "successes" are not followed for any length of time to ascertain the success was sustained. Doctors/practitioners/theoreticians pass this along as "this helps patients," sometimes based on no more than 1 person out of hundreds having some positive response, no matter how small or how brief, and we're off to the rumor mill races!


In case anyone thinks we "old timers" are just being sourpusses about it, it takes a tremendous toll on us to

1. constantly seek the next "remedy"; research it; weigh the theoretical benefits against our own case possibly with expensive tests that we discover after the fact their interpretation was based on one person's insubstantial "theory"
2. get our hopes up that this one will be the one that will help
3. buy it, try it
4. keep taking it even though it seems to be harming us because we've been persuaded by the "prevailing wisdom" that this thing is "good" for us
5. finally realize we should get off it already; enough harm's been done and wondering how long will it take to recover from this new insult to our bodies
6. deal with the disappointment of yet another remedy not being "it" and realizing hope has just dwindled by one more
7. being disillusioned that "experts" and others wisdom/experience isn't of much value to us
8. feeling somehow defective because we (obviously! - at least that's the message practitioners and others convey when they don't share with us the many other failures) are the only one who doeesn't seem to derive benefit.
9. reclaim our sense of self worth and get over the disappointment/depression in addition to getting through the day in pain and debilitating exhaustion.

I think everyone should keep in mind that Judy Mikovits is not a clinician and she would be the first one to remind us of that. That's not to say that recommendations based on observations she has made in the lab might not be beneficial for some. I understand the sentiment of wanting to do something instead of nothing, but that doesn't necessarily mean there is validity in these suggestions. Nor does the caveat "Might as well! What have you got to lose?" really apply, as I explained above.

Hi, illsince1977.

I hear you. "Since 1977" is a very long time. I understand the frustration with all these attempts at treatment. I also long for the time when we have these things better understood and can recommend treatments with more assurance that they will actually help.

Best regards,

Rich

 

[ukxmrv]

The reason I have been following the XMRV news and been tested is that I hoped that this might finally be the answer for me or at least part of the problem. I'm not disappointed in Dr Mikovits or any of the reports by attendees. I'm very grateful that she would even try to tackle treatment options. As "Illsince1977" pointed out Dr M is not a clinician and she does tend to say this at meetings.

We still don't know what will be the best course of action against the virus it's only sensible that we do a recap of other possible things we can do. Not all the XMRV+ are going to be the old "tried everything" bunch but I do know from others that we paid for the test and followed this saga because there was nothing else available to us, after trying decades of treatments.

We all know that we need clinical trials of new drugs and new treatments. Until we have that the "tried everything" brigade in the UK will either be sitting waiting/watching or be off to Belgium or wherever they can for the experimental stuff.

 

[Sean]

Been there, done that with most of these suggestions! Tired of hearing the "same old, same old" that mostly only works for/applies to a few; a limited number of successful cases get amplified way out of proportion. In addition, those "successes" are not followed for any length of time to ascertain the success was sustained.

Doctors/practitioners/theoreticians pass this along as "this helps patients," sometimes based on no more than 1 person out of hundreds having some positive response, no matter how small or how brief, and we're off to the rumor mill races!


In case anyone thinks we "old timers" are just being sourpusses about it, it takes a tremendous toll on us to

1. constantly seek the next "remedy"; research it; weigh the theoretical benefits against our own case possibly with expensive tests that we discover after the fact their interpretation was based on one person's insubstantial "theory"
2. get our hopes up that this one will be the one that will help
3. buy it, try it
4. keep taking it even though it seems to be harming us because we've been persuaded by the "prevailing wisdom" that this thing is "good" for us
5. finally realize we should get off it already; enough harm's been done and wondering how long will it take to recover from this new insult to our bodies
6. deal with the disappointment of yet another remedy not being "it" and realizing hope has just dwindled by one more
7. being disillusioned that "experts" and others wisdom/experience isn't of much value to us
8. feeling somehow defective because we (obviously! - at least that's the message practitioners and others convey when they don't share with us the many other failures) are the only one who doeesn't seem to derive benefit.
9. reclaim our sense of self worth and get over the disappointment/depression in addition to getting through the day in pain and debilitating exhaustion.

I think everyone should keep in mind that Judy Mikovits is not a clinician and she would be the first one to remind us of that. That's not to say that recommendations based on observations she has made in the lab might not be beneficial for some. I understand the sentiment of wanting to do something instead of nothing, but that doesn't necessarily mean there is validity in these suggestions. Nor does the caveat "Might as well! What have you got to lose?" really apply, as I explained above.

Well said. I agree. Individual patients do not have unlimited capacity to endlessly test new, 'promising' therapies (organic or otherwise), or to keep trying the same old thing when it only gives marginal results at best.

 

[Crappy]

I fit in the "old timer" category. I suffered virtually alone for a long time. Paying for or Mercedes, large homes and airplanes for others to enjoy.

It's strangely comforting to find people that have similar experiences, "know my pain".

I don't feel any better, but yet I feel better.

I guess misery truly does love company.

 

[Mark]

Mark,

I had the opposite reaction about the cortisol comment. My cortisol is very low so reducing it further isn't an option for me. So many CFS studies do show low cortisol in CFS patients. The mind/body connection in that way therefore loses it's importance to CFS and XMRV.
...
however, I don't want to keep trying all the things that didn't work for me, over and over again.

Hi xmrv, and illsince1977.

I do get the point about going round and round in circles getting the same treatments recommended over and over and going through that cycle of hope and eventual disappointment is absolutely draining. I've been at it 15 years myself and I recognise everything you say - it's devastating to keep pouring one's money into stuff that you really doubt will make a difference - but I suppose all that experience isn't in the front of my mind these days, since I'm in a place of relative stability...and I'd really given up hope, and stopped experimenting with treatments, when XMRV came along, so it's quite a while since I committed to anything significant in terms of new treatments. So it's helpful to be reminded of how that cycle of hope and disillusionment feels....and to imagine how it might feel after 34 years or so of it. (!!!)

Also, I totally wouldn't suggest to somebody that they try again with something that hasn't worked for them in the past - actually I'd tend to recommend my own strategy of stopping fairly quickly with treatments that make you feel worse (rather than trying to "push through") and moving straight on to try something else - and I certainly try not to be pushy with any suggestions I make - I hope I'm not, anyway.

So I really don't want to press the point and get into an argument about it, but still it does seem to me that there are quite a lot of people who are at least diagnosed with ME/CFS who do find some benefit from meditation, or other 'mind/body' (I don't like that term btw) techniques. I get how frustrating it must be for 'old-timers' but at the same time, there are almost certainly people out there who will benefit from some of these ideas, so it's a hard balance to strike.

I've got to say, though, that the observation of low cortisol levels doesn't seem to me to be at all contradictory to the potential value of meditation/relaxation/stress-reduction; rather, it seems clear that keeping cortisol low is obviously important because we know now that XMRV likes it! I'd interpret the low cortisol levels as evidence suggesting that cortisol is either (a) being kept low as an adaptive mechanism because cortisol production ends up being harmful, or (b) being depleted because it's being overproduced in short episodes and then remains lower after those spikes. Cortisol levels do fluctuate a lot through the day, so I'm not sure whether the research is detailed enough to know whether the generally low levels aren't also accompanied by big momentary spikes of high levels as well, for example...

I think, if pushed to a guess, I'd explain the low cortisol levels as an adaptation that most ME patients have made already - and maybe the majority who already have low cortisol levels are precisely the ones who won't benefit from mind/body techniques because they're already doing all they can in that area. Maybe it's only those people who are failing to keep cortisol low, for whatever reason, who feel a benefit.

Anyway I'm not trying to preach the case for mind/body and meditation techniques here - far from it - but really I just want to say that I don't read the generally low cortisol levels as meaning that mind/body issues are any less relevant than they were before XMRV - which is to say: not particularly relevant at all: they are just one aspect that's worth trying, to see if it helps even slightly, along with a whole load of other things, and no more than that...and, most emphatically, not a cure, but merely something that helps some people, somewhat, some of the time.