Status Post XMRV

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I have been in the doldrums, but since blogging is my hedge against powerlessness…

This is how deep in it I have been; my inner blogger didn’t even twitch for this: Partial molecular cloning of the JHK retrovirus using gammaretrovirus consensus PCR primers. Grossberg SE, …, Sun HY

 “Unlike earlier reports, in which MLV-like sequences were identified in human source material, which may have been due to murine contamination, budding retrovirions were demonstrated repeatedly by electron microscopy in uncultivated lymphocytes of the index patient that were morphologically identical in their development to the virions in the JHK-3 cells, and immunological evidence was obtained that the index patient produced IgG antibodies that bound to the budding viral particles in patient PBMCs and in the JHK-3 cells. “

It’s tough to keep writing about it when the medical and scientific communities aren’t interested. This group has been publishing about their retrovirus since 1995. Andrew Mason and Hervé Perron have been publishing about their respective retroviruses for over a decade and nobody is interested:

I haven’t heard or seen anything that makes me feel hopeful of meaningful treatment since the demise of XMRV. The only perhaps promising development was Dr. Hornig saying publicly that they have isolated a novel pathogen. Cruel to have said so without more information, but let’s hope it is true and they publish soon. Otherwise, it is pretty much the same ole, same ole.

Chronic Lyme Disease seems to be experiencing a horrifying resurgence as the explanation for what ails us. A wise doctor, one of the few, once told me that antibiotics are the surest path to worse. Wish I had listened to him. ILADS hasn’t updated their guidelines since 2006, even though lots and lots of people have been made worse by their protocols. They are stumped because in all these years they still can’t show that what they do is a good idea.

Borrelia burgdorferi is obviously one of the things that can happen to the microbiome if one is bitten by deer ticks. The problem is that it can’t be eradicated  with antibiotics once it is established and the antibiotics are harmful. Weigh these papers:

This is as positive as it gets in the literature:

Nevermind that we can’t really tell who has it or whether it is what is making them sick. They could tell that a man from 5000 years ago, found frozen in the Aps had Bb, but he died of trauma. However, they can’t really tell if we have it. The Iceman’s Genome Reveals Evidence Of Lyme Disease, Lactose Intolerance And Distant Relatives.

But what about the people who do get better from antibiotics? My daughter got several remissions in the early years. Did it even have anything to do with Lyme? Broad spectrum antibiotics kill in a broad spectrum way.

So who should get antibiotics? That is the million dollar question. I keep listening and it seems to me the people who are better off for having taken antibiotics know it pretty quickly when they go on. When it works, it works. This idea that a prolonged “herx” is a good thing is lunacy. As bad as blood letting with leeches. It is a cytokine storm, not a good thing and if it lasts a long time, it is damaging.

Two suicides in the Facebook ME/Lyme community yesterday. Both beautiful young women. This should not be happening! And the response is, we understand why they did it. How can that be? When is it going to change? Not soon. Nobody is going to save us. We have to help ourselves. The disease is treatable. Not curable, but treatable. Read the last blog. K is not an anomaly. She has come a huge distance by finding synergy in gentle therapies, none of which would have done it alone. But those therapies aren’t even on the table for discussion.

Ali and I have been on the Wahls diet for 2 weeks. Terry Wahls is a physician with secondary progressive MS who got herself out of a reclining wheelchair with diet. She was already on a paleo diet which had slowed her progression, but modified it to get reversal. Since my working hypothesis is that we have MS Light, I decided to give it a try. I already know it is helping me. My chronic nausea is almost gone and my gut function is much improved. Ali is less sure, but likes it and plans to continue. Only two weeks. We were already on a good gluten free, mostly dairy free, whole food diet. Changing diet is a process, but we have taken it to the next level. Force feeding vegetables:). 9 cups daily, or as much as we can stuff in. Lots of leaf and berry smoothies. We have eliminated grains and added sea vegetables. Working on organ meats and bone soup.

There is no one right diet for everybody. Nor do I expect it to be curative. Like everything I do, it is about quality of life. In particular, getting our food from local CSA’s and learning about the source of what we are eating is feeling really good. Learning about food is fascinating. Focusing on making each bite nutrient dense is working for me. Yes, it is a lot of prep work and yes, it is more expensive. I couldn’t have started without Ali, but now I could do it alone. I posted something about the diet on Facebook and the comments that it is impossible are heartbreaking. Why do these patients have no help?

Dr. Wahls has a book on Amazon Minding My Mitochondria in print and kindle editions. Here are her recent papers:

She is doing the work. The Wahls Foundation is working to further her research and is on Facebook. She found something that helps and she is putting it out there. Here are the videos that inspired me: 

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16 thoughts on “Status Post XMRV”

  1. Anyone can say what Hornig did. Until she publishes they have found nothing. Are we supposed to follow them around until they do? Would be better if people supported those providing published evidence, such as Dr Grossberg.

  2. Thank you not only for the blog, but for the information about Dr Wahls all ready being on paleo before coming up with her protocol. I didn’t know that important point and it helps to know that she was all ready doing what has helped an awful lot of people but still had to take it to a higher level to get optimal results.

    It can be overwhelming financially and energetically, but if we can approach it with a small steps and little changes mentality instead of the all or nothing right now, it will still serve us while we continue the interminable waiting game for answers. That isn’t a lecturing comment, it’s to remind myself as much as encourage others. ;-)

    One thing I wasn’t expecting when we started with our CSA – everything comes washed and ready to eat. That is huge for me to not have to be washing and spinning greens.

    • I agree, very important that she was already on a good diet. Me too, but this is better. Huge increase in vegetables, berries and seeds. Huge increase in variety. No grains. No dairy except SCD superfermented yogurt. Lots of fermented foods. Lots of kelp and sea vegetables. Home made stock with bones. Planning to add organ meat as soon as I have a good source. Everything ordered on the internet comes shrink wrapped in plastic. Need a local source.

      I LOVE almond and cashew milk! I am definitely going uphill again, after a rather prolonged stall. Feeling hopeful…

    • I don’t know, Ryan. I’ve been thinking about it since you asked the question. I am assuming that you are an ethical vegetarian. It’s tough to replace the nutrients that come from meat, especially if you don’t eat grains. There are problems with consuming all the major sources of vegetable protein in excess. Soy is pro-estrogenic, and often GM’ed. Nuts and legumes have high levels of phytic acid, an anti-nutrient, in addition to the good stuff. Eggs I guess, maybe goat cheese. SCD superfermented yogurt? The best would be some of each source and as much diversity as possible. Would you consider eating shrimp and shell fish?

  4. I must clarify at the onset that I am talking about the distinct clinical entity Myalgic Encephalmyelitis not people with idiopathic fatigue and a few minor symptoms whose fatigue can have multiple origins/Whoever states that its possible to diagnose a distinct clinical entity using an approach based solely on symptoms is nuts a deceive(like so many so called advocates out there)r or a psychiatrist( both nuts and a deceiver) .Having said all that a perusal of the literature reveals that patients with ME and MS share a great deal of immunological ,physiological and biochemical abnormalities.Both sets of patients have chronically activated immune systems,high levels of oxidative stress,low NK function,hypoactive and hyperactive HPA axes,dysutonomia, autoantibodies,mitochondrial dysfunction, Receptor abnormalities on T cells,IGA and IGM towards neoepitopes,intestinal permeability, pathological levels of fatigue and post exertional relapse and strong evidence of pathogen involvement in the etiology and pathophysiology. The main difference appears to be that the level of inflammation is higher in people with ME than people with MS resulting in more widespread mitochondrial damage and bio energetic failure.Paradoxically a higher degree of inflammation is neuroprotective .The neurological problems encountered by people with ME stem from severely compromised energy production in the brain leading to widespread metabolic defects in white matter while people with MS suffer frank and frequent lesions which can unfortunately lead to irreversible neurological damage and quite horrendous consequences.I see ME and MS as different branches of the same tree or sister dieases. We have obvious enemies but in my view we are in greater danger from individuals and organisations who pretend to be our friends but are really trying to maintain the tatus quo and support the psychiatrist generated Fukuda fatigue criteria

  5. I think one has to separate ME/CFS the disease from ME/CFS the diagnosis.People are being given ME/CFS the diagnosis when they dont have ME/cfs the disease.There are a veritable army of “advocates” out there fighting to keep diagnostic criteria not capable of diagnosing ME/cfs the disease for financial and or political gain

  6. I dont know how many people realise that the excuse for developing the Fukuda fatigue criteria was that the holmes criteria identified too many people with nneuropsychiatric symptoms.What they dont tell you is that the holmes criteria identified a group of people with a range of far more severe symptoms and much higher levels of disability than fukuda and of course the hallmark presentation of a global excasserbation of symptoms or a full blown relapse following even minor increases in physical or mental activity.Whoever pushes the fukuda fatigue criteria imo has their own interests at heart and not the interests of people who suffer from ME/CFS the disease. Neurological and neuropsychiatric symptoms go hand in glove in people who suffer from neurological dieases,Holmes was abandon because while far from perfect was too accurate a device for identifying people who suffered from Incline village disease( if used in honest hands)

  7. Isn’t it interesting this paper that was just published July 17th, 2013:

    Infection with retroviral vectors leads to perturbed DNA replication increasing vector integrations into fragile sites: http://www.nature.com/srep/2013/130715/srep02189/full/srep02189.html

    “Genome instability is a hallmark of cancer. Common fragile sites (CFSs) are specific regions in the human genome that are sensitive to replication stress and are prone to genomic instability in different cancer types. Here we molecularly cloned a new CFS, FRA11H, in 11q13. The genomic region of FRA11H harbors a hotspot of chromosomal breakpoints found in different types of cancer, indicating that this region is unstable during cancer development. We further found that FRA11H is a hotspot for integrations of Murine Leukemia Virus (MLV)-based vectors, following CD34+ infections in vitro as well as ex-vivo during gene therapy trials. Importantly, we found that the MLV-based vector infection in-vitro leads to replication perturbation, DNA damage and increased CFS expression.

    This suggests that infection by MLV-based vectors leads to replication-induced genome instability, raising further concerns regarding the use of retroviral vectors in gene therapy trials.”

    Here’s more:
    “We have previously found preferential integrations of retroviral-derived vectors, based on Moloney Murine Leukemia virus (MLV), into CFSs21 both in vitro and in gene therapy trials. Unfortunately, in two gene therapy trials on patients with X-linked severe combined immunodeficiency (SCID-X1), five of the 20 treated patients developed monoclonal acute lymphoblastic leukemia-like lymphoproliferation. The leukemia in four of these patients involved activation of the LOM2 proto oncogene22, 23, which resides within the CFS FRA11E21.

    Here we studied a region in 11q13 known to be a hotspot for chromosomal instability in many cancer types. Recurrent amplifications in this region are found in 15% of breast carcinomas, 13% of lung cancers, 21% of bladder tumors, 50% of esophageal cancers and 45% of oral squamous cell carcinomas24. Recently, a large scale analysis of 50 gastric tumors revealed that the 11q13.3 region is among the most common genomic deleted regions25.”

    And pay close attention to this from the paper:

    “These findings shed new light on viral-host interactions, and raise new concerns regarding the use of viral vectors in gene therapy trials.”

    So where have the safety concerns been all these years regarding the use of MLV viral vectors in gene therapy trials? How about the use of them in other forms of research or therapy trials, and xenograft?

    This is the second recent paper discussing the potential safety concerns using MLV retroviruses in cancer therapy: http://www.retrovirology.com/content/pdf/1742-4690-10-34.pdf

    Xenotropic MLV envelope proteins induce tumor cells to secrete factors that promote the formation of immature blood vessels

    Conclusions
    “Together these results indicate that xenotropic MLV envelope proteins are sufficient to induce the production of factors by tumor cells that suppress vascular SMC differentiation, providing evidence for a novel mechanism by which xenotropic MLVs might alter tumor pathogenesis by disrupting tumor vascular maturation. Although it is highly unlikely that either XMRV or B4Rv themselves infect humans and are pathogenic, the results suggest that xenograft approaches commonly used in the study of human cancer promote the evolution of novel retroviruses with pathogenic properties.”

    Now this is also a great time to start looking at how xenograft approaches in the study of human cancers, might promote new novel retroviruses that could end up being pathogenic! Just how long have they been doing this? 20 years? 30? Longer? We know now how easily these retroviruses can contaminate other cells and laboratories! And according to these 2 papers they are unsure of how safe the use of MLV’s vectors are. Looks like they are saying they could potentially promote new cancers in those with cancer, or compromised immune systems. And that they are also unsure if they could produce new, possibly pathogenic retroviruses with the use of them in xenograft approaches. Just amazing!

  8. I have been on the Wahls Diet for a few months now after reading her book and watching some videos. I can’t do it perfectly as I live in rural Alaska and getting much of the diet is a challenge, but I have managed to find most of what I need. I am now doing Casey Ho’s Pop pilates three days a week and a Jillian Michaels exercise video three days a week. I take one day off. Before the diet I could only do half of the Jillian Michaels video a day. These exercises are done starting when I wake up in sets of three to five, I do what I call forced breathing which is deep and a bit faster than normal while I do them. Then I rest a while with my legs elevated or partially reclining. If I don’t feel very well it can take me the whole day to do them, but I can finish. I very slowly increase the reps and usually have a flare when I do so, but the flares are milder and shorter on the Wahls Diet. The miracle is I can ride a bicycle almost every day, but I have to rest quite a while when I get home. The side effect of riding the bicycle is the endorphins make me so happy I often find myself dancing and singing. I make sure my meals are prepped before I ride my bike in case I am wiped out. My vascular headaches are better, milder and don’t last as long. The side effects of this diet are a dramatic change in appearance, higher brain functioning and automatic weight loss. I am shocked by my appearance in a good way. My life has some stressors and besides ME/CFS I also have severe PTSD. The Wahls Diet helps counteract some of the negative effects of the PTSD as well. I am not cured, but the quality of my life is better, I have less pain and more energy. I also cook with spices and herbs that help with pain and other issues along with drinking lots of green tea. I am on my own where I live for medical care. I had a doctor here tell me I was bipolar because I reported sleep problems even though he knew I had ME/CFS and PTSD. I said tell me the symptoms you are seeing that lead you to believe I am bipolar…crickets. He balked when I requested an MRI stating I was sure I had brain lesions due to MS type s/s. Then he told me the report was normal and refused to let me see it. I went to the hospital and signed out my records, the MRI showed brain lesions. Another told me turmeric is not medically indicated, I told her pubmed had over 7000 articles and much of them indicate that it is. Another insisted I have a sleep study as she was sure I had sleep apnea, I told her I did not, but had the usual sleep issues from PTSD and ME/CFS along with restless leg syndrome. She insisted which cost lots of money. She reported the results were normal, except that my legs moved around a lot. No kidding? Thanks for the info. Her diagnosis for the brain lesions, drum roll please…they are caused by my headaches. I told her I was not buying her headache theory. Trying to get counseling for PTSD is even more frustrating here. I’m a DES daughter and when I had a vag exam I was told my vaginal tissue looked “weird”, no kidding, you can’t make these things up. I am completely on my own, so I do the best of whatever I can do to make myself as healthy as possible despite the poor health care.

    • Thank you for leading the way, Celia. Your experience is extremely important. We have to do what we can to improve our health on our own. Doctors don’t have the answers and often make things worse.

  9. “It’s tough to keep writing about it when the medical and scientific communities aren’t interested.”

    Well, I can tell you that some people are in the process of doing their best to change that reality. Soon, if only for their own selfish interests, they will have no choice but to care. Note the excellent work of Dr. John Chia of the Enterovirus Foundation. It all started when his son came down with some form of ME/CFS. When the children of all these arrogant, apathetic bastards start to get sick, things will start changing in a hurry.

    I’m very glad to read of your paleo diet changes. High quality raw food is a must for anyone with our condition. Fermented veggies are another must. I have never had such “stomach peace” since starting to eat this way long ago. This is from someone who used to have extreme acid reflux.

    Keep those salads, juices, and smoothies coming.

    Warmest

  10. Dear Jamie,

    I am being treated for chronic Lyme and your words have caused me concern as I am part way through a long-term course of antibiotics.

    Since there are so may of us in this situation, it would be really appreciated if you would write more on this topic in the future.
    None of us trust the CDC or their cronies, so who else can we turn to for an opinion that opposes that of ILADS?

    Here are some questions that occured to me after reading this blog:

    What about all of those people we meet who claim that long term abx have brought them back from hell? Are you saying they exist, but don’t go through a herx?
    From my own online reading, there are very rarely stories claiming complete recovery from chronic Lyme, but most significant improvements do seem to occur off the back
    of long courses of abx.

    What if someone gets relief from Lyme-specific abx but not broad-spectrum abx?

    Can you say more about your distrust of Lyme tests? Surely accredited companies that operate in the US are required to carry out tests that correctly
    reproduce (within some reasonable limit) negatives for controls?

    You say that if abx work they almost always work immediately. But surely it depends on the dose and type of abx? From my own experience I notice nothing
    from azithromycin 500mg + doxycycline 400mg, nor from 1g amoxicillin, for example. But I notice a huge positive effect from 3g amoxicillin.
    So in order for us to say that abx don’t work immediately, don’t we have to first test a large range of types and doses? (I realize that you were
    not advocating one way or the other).

    What about co-infections? Most “Lyme-literate” physicians believe these often have to be treated first before Lyme treatment will begin to be beneficial.
    Perhaps it is the case that “Lyme” is now rarely transmitted alone, because the entire ecology in which Borrelia, ticks, other vectors, reservoirs,
    mold etc etc thrive is changing so rapidly that studies become quickly outdated and we have to use what works now, not what worked 15 years ago?

    If it really were the case that long-term abx aren’t beneficial, wouldn’t just a few ILADS doctors notice, then come out and say so?

    How sure are you of what you said about Lyme, is this just a feeling/letting off steam, or are you quite convinced?

    I don’t know why ILADS don’t have more positive papers to show (could it be bias in the research world?), but I don’t know why I read so
    many positive accounts of long-term treatment either.
    For as much as I value your opinion there is also plenty to the contrary and I am left confused and distressed. I hope you’ll find the time
    to write more on Lyme.

    Thanks,

    Mark

    • Mark,

      I have too much to say to respond to your excellent questions quickly. I need some time to answer, but life intervenes… I will respond with a blog in the near future. The short answer is that knowing which ME patients to treat for missed Lyme Disease, with what and for how long is an unanswerable question at this point. The medical decision making involved is in the realm of reading the tea leaves. A risk benefit assessment needs to be done for each patient, but myth clouds judgment in the case of the movers and shakers who call the shots at ILADS. Lots of well meaning doctors from the trenches go to a meeting, hear the ILADS party line and leave unafraid of using drugs that they should be very afraid of. The intentions of these followers are good, but they have been sold a bill of goods. A prolonged “herx” is not a good thing. A PICC line is not a small thing. Broad spectrum antibiotics kill in a broad spectrum way and cause damage to the body in various ways over time. There is no such thing as an antibiotic specific for Bb. There is no meaningful testing available to monitor treatment. The little bit of experimental evidence we have indicates that established Bb cannot be eradicated with long term antibiotics.

      Hoping to spare a few people the mistakes I made,
      Jamie

      • I hope when you are able to take some time to write more about the Lyme/long term abx issue, you also spend some time writing about the specific ways that you believe long term antibiotic therapy was damaging to you and your daughter.

        As a chronic Lyme patient myself, I have seen quite a bit of improvement on antibiotics. I stopped them recently for about 4 months and had significant backsliding. I’m back on them again.

        I’m very concerned about trading short term benefits for long term risks but need to know more. I know several people in situations like mine that are certain they would be dead without antibiotic treatment. In that case, it really doesn’t matter what the long term effects are if they aren’t around to appreciate them.

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