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XMRV Link Gives False Hope for CFS

Discussion in 'XMRV Testing, Treatment and Transmission' started by Fejal, Sep 11, 2010.

  1. Fejal

    Fejal *****

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    Considering that 4% of healthy normal control subjects have XMRV virus researchers have stated that it likely is only a trigger or coinfection in chronic fatigue syndrome. Why then do patients here think that some kind of retroviral therapy will cure chronic fatigue? Seems like a wild goose chase.

    Instead, people should concentrate on finding and treating the culprits behind the lowered immunity rather than these opportunistic infections.

    http://chronicfatigue.about.com/b/2010/02/01/wpi-presentation-on-xmrv-chronic-fatigue-syndrome.htm

    http://www.forums.aboutmecfs.org/showthread.php?6935-XMRV-Low-Copy-Number

    I did some searching and found research showing that cytokines produce an excess of NO production and this inhbits mitochrondrial biogenesis. http://content.onlinejacc.org/cgi/content/full/35/5/1338

    http://ajpendo.physiology.org/cgi/reprint/289/6/E1101

    So a chronic infection with low grade inflammation would directly inhibit the growth of mitochrondria resulting in massive fatigue. This fatigue would be worsened while treating the bacteria but decrease as the bacterial numbers were lowered.

    Another thing I turned up is that isoflavones stimulate mitochondrial biogenesis (reproduction), although it probably wouldn't work if someone's NO is inhibited but maybe once the load is low enough.

    I am in treatment with a modified version of the Marshall Protocol for L-form bacteria. This treatment involves low dose antibiotics plus supplements to restore blocked apoptosis pathways. I have consistently observed that when my NK-FB pathway is blocked by taking turmeric without Milk Thistle protection I am twice as tired and require more naps than if it is protected. Even if XMRV lowers energy production, if the L-form cell wall deficient bacteria hypothesis is correct then eradicating the bacteria so the body doesn't have to mount a large scale defense spares energy and could be enough to return to a functional range.

    So this theory is hopeful that the mitochrondrial deficit may be curable.
  2. taniaaust1

    taniaaust1 Senior Member

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    but what if the virus after the initial infection goes laying dormant for years and years before appearing. That is what happens with HIV another retrovirus. Hence many are affected and appear healthy hence i dont understand how just cause it is also found in healthy people, how that could mean that it is certainly just a secondary thing. It is quite logical that it could be doing what HIV does.

    I too think that too many people are jumping to assumptions but yourself just jumped to something which is just an assumption too... that being to think that it those healthy ones who have it, wont all end up sick too. There is nothing to say that wont or will happen.

    Many have tried the Marshall Protocol and are still sick (some who did the full protocol actually developed life threatening issues from it). i agree its good to try things, but often things dont work for people so its easy to understand why some may desperately try antiretrovirals. The ones who do end up trying the AIDS drugs, many or most, would of already tried Marshall Protocol as that is quite common.

    how does one suddenly find the cause behind their lowered immunity (or illness), when they have been seeking the answers for the past 10-30 years without any success. It's okay to say that but I know that I myself have not a clue why my immunity is lowered.. (other then knowing that molds are a current factor for me..but even without that factor when i lived elsewhere for a while, I still dont get well). I was such a healthy kid before i got EBV severely.

    things just are not simple.
  3. Fejal

    Fejal *****

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  4. Daffodil

    Daffodil Senior Member

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    i think MP works because some antibiotics have anti inflammatory properties. once you stop the MP, the disease returns for most people. from what i saw on the MP boards long ago, even the moderators are still on the protocol after years.
  5. Fejal

    Fejal *****

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    I'm on it now. The abx aren't anti-inflammatory they harm bacteria which increases inflammation, but benecar is. What happens is that when you take a dose of an abx combination you get an immunopathology reaction (aka herxheimer) that lasts 24-48 hours. This reaction decreases with subsequent doses until there is no response (4-5 doses). If the abx were anti-inflammatory there wouldn't be acclimation.

    I hate the original Marshall Protocl. I think the reason why people progress so slowly on the Marshall Protocol (MP) and don't get well is because it only blocks one of the four known pathways. This allows the immune system to be 3/4 impaired. No wonder treatment takes 3-5 years and many of the phase 3 people still have a lot of photosensitivity. I block all with supplements and dose twice as fast (daily rather than every two days). See my post on the problems of the MP. My photosensitivity was mostly gone by the end of phase 2. I still have a little but it's not enough for the NOIR glasses they recommend. (too dark)

    I'm curious, how many people here have problems with high inflammation? i.e. intermittent headaches.

    I think I'm going to try boosting my isoflavones with fava beans (soy isn't healthy) and see if it helps reduce the number of naps and increase my energy.
  6. taniaaust1

    taniaaust1 Senior Member

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    :p cant debate that one.

    i wish i had my debating brain back to debate the rest, thanks for the links
  7. energyoverload

    energyoverload

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    The marshall protocol also utilizes Benicar - which manipulates the vitamin D receptor - having a powerful antiinflammatory effect. Moreover, with the MP by eliminating vitamin D from the diet, you are effectively reducing blood calcium levels.

    Calcium is a stimulatory ion - in that it is used to initiate nerve impulses, not inhibit them. Magnesium & Potassium inhibit the firing of most neurons. Calcium competes with magnesium. So lowering the calcium intake can make the brain less excitable - hence perhaps why drugs like gabapentin and pregabalin can improve symptoms: http://en.wikipedia.org/wiki/Gabapentin (they inhibit voltage gated calcium ion channels). I think the marshall protocol really only improves people on a symptomatic level. Otherwise surely by now if it really was a cure, all these people would be off it by now, but many are on it for years and years.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    your right sue, teracycline antibiotics do have anti-inflammatory effects, its part of the reason why these abx are used in acne, to help reduce inflammatory process involved in acne. They have also found similar effects in arthritis. I think i have also read that they can have immune modulatory effects as well.
  9. guest

    guest Guest

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    First of all you don't know the culprit behind lowered immunity. Second of all you don't know if it's an opportunistic infection. Third of all your statement sounds super arrogant to me.

    That's just great, you figured out CFS :rolleyes:, maybe you can start your own treatment protocol and tell us and all the doctors what we need to do. I'm 100% sure that it won't cure anyone but I'm sure it helps your ego.
  10. Sean

    Sean Senior Member

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    Fejal

    The sudden onsets we so often see with ME/CFS could well be the activation (or full expression) of previously acquired but asymptomatic (or only very mildly expressed) infection, not necessarily the initial infectious episode. Your argument against it seems pretty weak to me.

    If XMRV (or more broadly, HMRVs) are just opportunistic infections on already immune compromised people, they you also have to explain why they only target this group of patients (in these numbers), and not any non-CFS patient groups with various health problems that compromise immune systems. If infection with HMRVs is only a secondary phenomenon, then we must have a very specific pre-existing immune defect to allow it, which would be very interesting territory of its self.

    And, of course, we are not seeing large numbers of patients recovering from ANY treatment protocol so far, so I don't think the antibiotics regimes have any serious therapeutic evidence to back their underlying model of ME/CFS.

    Sorry, I am not convinced. It is very unlikely to get the very high correlations we are seeing between specific group of patients and a specific class of infectious agents, without the agents having at least a major pathogenic role, and (I think) probably a primary causal role.
  11. SOC

    SOC Moderator and Senior Member

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    :victory: Hurray! We can disagree without resorting to insults and personal attacks. :victory:

    Thanks, folks! I really appreciate the civil tone of this thread.
  12. Fejal

    Fejal *****

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    Energyol-I take 500 mg calcium per day as part of a multi-mineral (Country Life Total Mins Iron Free) so my calcium levels are probably not low (will update in 48 hours after the results of my latest blood panel are in). It also has magnesium, chromium and the other macro and trace minerals.

    Heapsreal-then why the increasing tolerance to the herx type reaction? (not addressed by you)

    Diesel-Sorry but I’m not a sheep and I do have a health background. Also let's face it, if you rely on the pharmaceuteutical research machine to cure the disease they will most likely only try to create a drug to palliate it and make as much money as possible. They would never investigate a supplement they can't make tons of money on. Only National Institutes of Health grant funded projects have a chance of being interested in trying to cure anything. So I would advise you to not lose hope or you end up with the self fulfilling prophecy that CFS will never be cured.

    Frankly I think the easy criticism of the Marshall Protocol is highly questionable. Rather than investigate it seriously I have seen establishment individuals take an ad hominem approach against it's founder and exagerate its problems to dismiss it prematurely. I don't care whether it works, but if you're going to say bacterial L forms don't cause disease then show me a good study disproving it not using fallacious attacks that any quack would use.

    Sean>If XMRV (or more broadly, HMRVs) are just opportunistic infections on already immune compromised people, they you also have to explain why they only target this group of patients (in these numbers), and not any non-CFS patient groups with various health problems that compromise immune systems.

    I think it comes down to who is being diagnosed basically. I think CFS is a trigger along with other viruses (Epstein Barr Virus) not the sole cause. CFS XMRV is easy to diagnose because its effect of impairing mitochondria and lowering immunity temporarily (as most viruses do) is taken advantage by bacteria evolved to mutate into L forms and parasitize the weakened neutrophils and initiate an increasing inflammatory cascade that severely impairs mitochondrial biogenesis and energy production. Other patients get XMRV, probably have a transient flu but then because their immune systems aren’t overwhelmed by the additional L forms recover in a few weeks. The virus goes dormant but seems to interfere with DNA repair mechanisms in some people causing the 30% increase in prostate cancer we see. It probably would be possible to duplicate the infection in a monkey model using the same biological agents and given a few months to incubate (though I feel sorry for the monkey).

    As I said before, if what you guys were saying was correct then the dosing order of Silymarin before Tumeric shouldn't matter. However, when I dosed Tumeric 45 minutes before Silymarin it caused massive inflammation (noted by need for increased frequency and quantity of NSAIDs) and progressive worsening fatigue. When I reversed this order to pre-ceed the Turmeric with the Silymarin, the latter protects the NF-KB inflammatory pathway with the observable effect of reducing inflammatory pain, improving sleep quality and within two days completely reversed the fatigue. If your hypothesis is correct then the order of supplements should have no effect on the energy production. This does not involve any anti-biotics at all.

    It was only after I added the additional supplements to the Marshall Protocol that my energy level made any improvements. This included better, deeper, more refreshing sleep. As time goes on my quality of sleep is improving and my fatigue lessening-especially after switching the supplement order.

    If anyone likes I can set up a thread on how to do a therapeutic test where people who suspect L form infection can reduce their vitamin D and unblock the blocked pathways to see if their symptoms are aggravated, indicating a positive. This is treatable.
  13. Mij

    Mij Senior Member

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    Fejal,

    What dosage of turmeric are you taking?

    Mij
  14. ukxmrv

    ukxmrv Senior Member

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    People with ME have been taking antibiotics, turneric, vit d (and avoidance), benicar etc for years. It doesn't work for many and that is why so many are interested in XMRV. We need to move on and look at new developments, rather than talking about the same ones over and over as new people try them.

    If it works for some, wonderful but why this belief that it could work for many?

    Why keep debating all the same things, decade, after decade? There is nothing new here.
  15. guest

    guest Guest

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    You should publish it through a journal, great science by the way.
  16. Daffodil

    Daffodil Senior Member

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    a few yrs ago, i was going to do the MP but my doctor said i am not a candidate because my 1,25 and 25 vitamin D levels did not indicate bacteria. at the MP site, they seem to push the protocol for almost all diseases and when you dont meet their vitamin D criteria, they just say its because it wasnt tested right etc etc.
  17. energyoverload

    energyoverload

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    It's interesting that you are taking calcium. But maybe the other non MP supplements are also helping you a great deal too perhaps? I have thought about going on the MP in the past, but I think it is a bit odd how long some of the moderators seem to remain on the protocol. 2-3 years or more sometimes. This suggests it is not curative.

    Also couldn't the L-form bacteria merely be infections secondary to XMRV/MLV induced immunodeficiency?

    If these L-forms were solely the cause of CFS wouldn't they get more consistent results with the mycoplasma testing? (this is L-form bacteria). Wouldn't they find like a good 90% of CFS people all have mycoplasma? Surely?

    Please can you put me in touch with anybody out there who once had CFS who has now finished the Marshall Protocol and is now SIGNIFICANTLY better, and remains better without having to adhere any longer to any of the MP - i.e. no longer any sunlight avodiance, vitamin d avoidance, chronic benicar and antibiotic consumption?

    Thanks. I want the MP to work but from what I have read once you stop people just get ill again...?
  18. jenbooks

    jenbooks Guest

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    Curcumin is a powerful plant estrogen, and that stimulates resident fungi, some bacteria, and apparently XMRV and perhaps other virii, who knows. Perhaps you have poor detox of hormones and it affected your liver, causing fatigue, and stimulated growth of pathogenic estrogen-dominant microbes and fungi. Stay off curcumin and any estrogenic plants and herbs. Silymarin might simply have mopped up that damage and helped your liver deal with the estrogen onslaught.

    Marshall protocol has mostly fallen by the wayside as a treatment or cure, and certainly did some serious harm to a number of folks (kidneys in particular) but otoh some did really well--a significant small minority--and hey if you feel better on it and feel it's safe it's your choice.
  19. ukxmrv

    ukxmrv Senior Member

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    It's also important to note that the "Marshall Protocol" keeps changing and being added to over time from things that other doctors have used for a long time with CFS patients. I remember when it was first introduced and Marshall came on some of the CFS internet groups to explain it. Sun/Vit D avoidance was the main selling point. He didn't last long on the groups.

    Now over time it's been added to and none of it is original. Every single addition we hear about is either a common supplement used by other doctors treating people with CFS or taken from other protocols such as antibiotics.

    So people say that they are on the "Marshall protocol" but they are really on the same thing other patients being treated by other doctors or people trying things mentioned for years on the internet. Marshall didn't introduce antibiotics or benicar. Why should it be his protocol?

    We are taking now here about Slymarin, tumeric and other commonly mentioned things on CFS treatment groups for decades. Talk about false hope.....

    Unless we find the cause and a cure for ME and CFS, we face an endless supply of newbies all trying the same old things that didn't work for the rest of us, then claiming that this is some how useful for the larger group it didn't work for in the past.
  20. xrayspex

    xrayspex Senior Member

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    Fejal, I am not sure where i stand on all of this but I do not have the science background to discern things as well.

    I am curious what you think of this; I had the redlabs/vip cfs comprehensive panel over a year ago and it showed low natural killer cells and high rnase and elastase but no inflammation but also iga issues -likely dybisosis. I am more the wired/tired sort of cfs, i dont sleep all the time or get colds a lot but I do have a lot of malaise, pem, o2 hunger and headaches, the headaches go thru phases related to external phenomena it seems like certain meds can set me off etc or irritate a tricky neck.

    So, I get godawful headaches sometimes but yet the bloodwork didnt show inflammation, it confused my doc. One thing I thought of to explain no inflammation was that I had just taken LDN an immune modulator for 6 month right before i had that test and it wasnt from the doc who ordered redlabs so he didnt know much about LDN and didnt make the possible correlation. I wish I would have had the test before and after LDN. but I havent been on LDN for almost 2 years now so should check inflammation again (is that the interleukins? I forget what the measure was for that there)

    ( I went and found vip cfs results and it is interleukins that measure inflammation and thats the one thing on that panel that was normalish for me)

    I have had low d on routine panels in the last 10 yrs, like 25. I supplement with it and cant tell if its good or bad. i still have heat and sun intolerance.
    Also, I found out am getting ostepenia this spring and am being more religious about calcium and I thought i noticed an improvement in my energy with cal supplements, i like easily digestible capsules or candies of it. what do u think of that? i dont understand the chemistry people mention with cfs and calcium etc

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