Hibernation Consternation

My muse left on extended vacation when the Lipkin XMRV study and subsequent press conference succeeded in discrediting retroviruses as a possible explanation for ME/CFS, with lots of important questions still left unanswered. The discussion reverted to whether or not it is a real disease and which set of diagnostic criteria are best, so there hasn’t been much to inspire me. It got pretty depressing. The IOM report was a joke: “The term ‘myalgic encephalomyelitis’ is not appropriate because there is a lack of evidence for encephalomyelitis (brain inflammation) in patients with this disease…”. Fail. I don’t know what to make of the Lipkin cytokine paper, because I take with a grain of salt results from a debunker on call for the government. XMRV wasn’t the first time: Lack of association between measles virus vaccine and autism with enteropathy: a case-control study. Nothing worth blogging about there. Certainly nothing hopeful. But recently, the Naviaux study was published and a couple of proposals posted by NIH have been making the rounds on Facebook, so I’ve had an uptick in email, some asking what I think about the paper and some telling me about successes with antiretrovirals in Europe, as well as encouragement to blog again. So, feeling very rusty, I’m going to give it a go.

My reaction to the Naviaux et al paper, Metabolic features of chronic fatigue syndrome, was dismay that the damage is so extensive and widespread. So many broken pathways. Finding a specific drug target seems very unlikely. There won’t be an answer anytime soon. They, and everyone else, including Lipkin and Hanson, are studying downstream effects, without attempting to identify the root cause. It’s a good thing that people are thinking and looking, but hibernation and dauer are not disease states and being compared to larval worms isn’t exactly the image change we need ;-). Even if they’re right and a handful of common abnormalities in this very heterogeneous group is accepted as validating real disease, my guess is that the findings will be similar in other diseases, e.g. GWI, fibromyalgia, ASD, maybe even chronic depression. GWI patients have PEM and often meet criteria for ME/CFS. As I said five years ago, I think all of these diseases of modern civilization are related and there is a family factor that confers risk to partners and offspring. There are even a few patients who believe themselves to be contagious by casual contact.

So what lies in wait to be activated by heterogeneous triggers and once activated causes immune dysfunction, neurological disease and opportunistic infections? The most likely explanation lives in the realm between retrovirology and genomics, the difference between the fields being as small as a single mutation. We have been injecting retroviruses and pieces of retroviruses into people for over a century. What are the chances that nothing bad happened from that? XMRV apparently doesn’t infect people, but injected into monkeys, it sets up a low level infection. Retroviruses recombine and rescue each other. Environmental toxins activate retroelements (HERVs and retrotransposons) which can recombine with each other or new incoming retroviral sequences and fully replicative retroviruses from vaccinations, biologics and lab workers. XMRV was created in a lab. The Paprotka paper said the odds of the recombination event that produced XMRV happening twice are infinitesimal. On the other hand, the odds of similar events having happened many times is very high I would think, since there have been so many chances. In the last few years it has been found that many cell lines produce viruses like XMRV which are capable of infecting human cells in tissue culture. Lipkin said in a press conference that 85% of Montoya’s samples contained retroviral sequences and in the XMRV study, 6% of patients and controls were positive for an antibody to SFFV, a very nasty murine retrovirus, but everybody is choosing to ignore those clues because that well is poisoned. Nobody wants to be the next Judy Mikovits. Lo and Alter both dropped it like a hot potato, returning to other research, never mind the question of how all these labs, Mikovits, Ruscetti, Silverman and Lo/Alter managed to consistently contaminate the patient samples at a higher rate than the controls.

Take a look at this paper: Are human endogenous retroviruses triggers of autoimmune diseases? Unveiling associations of three diseases and viral loci by Bjørn et al. “We speculate the possibility that recombinants or mixed viral particles are formed and that the resulting viruses stimulate the innate immune system, thereby initiating the autoimmune response.” They looked at multiple sclerosis, type 1 diabetes mellitus, and rheumatoid arthritis. It is one of several recent papers heading in this direction.

I hypothesized way back when that ME/CFS is related to MS. There are case reports of MS improving when patients take antiretrovirals, Multiple sclerosis patient walks after taking HIV drugs, and new cases of MS are rare or nonexistent in patients taking AIDS drugs, HIV and lower risk of multiple sclerosis: beginning to unravel a mystery using a record-linked database study.

Our very own Gerwyn Morris published an excellent paper on the subject of ME and MS being related diseases. Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics. I’d like to take this opportunity to acknowledge Gerwyn’s extraordinary achievement. If you search “Morris Gerwyn” on PubMed, his name appears as an author on 23 papers since 2013, usually as first author.

Lots of evidence has been published about the MS retrovirus, MSRV. Viral particles have clearly been detected, but it is less clear if these particles are ever infectious. There are several new papers reporting findings similar to this one, Two endogenous retroviral loci appear to contribute to Multiple Sclerosis.

Which brings us back to where this blog began. Are retroviruses at the bottom of ME/CFS? Might antiretrovirals be effective for ME/CFS and other diseases? Despite the thorough trashing of retroviruses in our disease and the intense ongoing fear mongering about how dangerous antiretroviral drugs are, apparently people are still trying it in Europe. The experience five years ago, when maybe a hundred people tried various regimens in a completely uncontrolled fashion, was some subjective improvement in about half, and no complete recoveries, except for one notable exception. The exception was a teenager who had only been sick for eight months. His mother wrote in the comments on this blog. He recovered fully, took the drugs for 6 months, stopped and as far as I know, didn’t relapse. I still find it upsetting that the prescribing physician was too cowardly to come forward and write a case report. How many teenagers could have been treated acutely since then? There were no injuries that I ever heard of. I was in touch with many of the doctors who were prescribing and there was lots of sharing, doctors and patients together, the only time I’ve ever seen that happen. One doctor I knew prescribed for 50 patients and concluded that it was better than placebo, but not worth the risk of prescribing it.

However encouraging the Naviaux paper may be with respect to advancing the case that ME/CFS is, in fact, a real and dreadful disease, it is discouraging with respect to finding treatment. A viable drug target seems unlikely. We are left with global strategies, hoping for synergy between therapies that don’t stand alone, same as now. But just as I was feeling dour about dauer…

The NIH compilation of responses to their request for proposals was published here. Read bottom of page 3 to top of page 4. I’m not going to mention any names for Google, because I don’t want to increase the risk of regulatory repercussions against a doctor brave enough to report successes with antiretrovirals. Also please read pages 9-12.

Then I heard from a patient in Europe who is having success with antiretrovirals after 20+ years of illness. In his own words:

I have been ill with ME since my mid-teens in 1994. Onset was in two stages. Firstly a gradual onset, whereby I was feeling increasingly more tested after the combined measleas/rubella vaccine, followed a few weeks later by the polio booster. And then secondly once that prodrome had got its hold, the downward cascade was always inevitable, and just waiting for me around the corner. 1994-2014 were harsh and brutal years. I hovered around 55% on the Bell scale and it was torture enough.

From September 2014 to July 2015 I took tenofovir 245mg. Improvement was an upward curve, albeit with some turbulence. Sometimes taking half- week, or full-week, or month-long breaks when I felt my body needed a rest from it so as to hold its own for a while. From August 2015 to September 2016 I added raltegravir to tenofovir and initially at full dose daily which sent me to sleep almost in the first few days. During this period I toggled around until I found the right balance for me. I got it right in the end around about June/July 2016 and the past two/three months have been great. My current regimen is tenofovir 245mg Tuesday through Friday, and on Tuesday and Thursday I also take raltegravir 400mg x 2. My original baseline was about 55% on the Bell scale for the twenty or so years when I was sick. I am now 95-100% and can go to the gym once weekly thanks to the antiretrovirals where I can build up quite a healthy sweat and recuperate normally. My VO2 max continues to increase substantially and my CD3-4-8 counts are x2.5 to 3 fold what they were before I started the antiretrovirals. Life is very good. I also take celebrex and multivitamin/antioxidant supplements and I am monitored closely.

This year I feel more confident about the winter than I did in 2014 on just tenofovir and than in 2015 when I was grappling with adding raltegravir. They were bad winters even though the arv’s did help me through better I guess. Winter 2016 can throw at me what it wants however. Now that I have hit the perfect treatment regimen with the antiretrovirals I am sure it will be a better winter. It was worth sticking it out and learning. I thank Dr Judy Mikovits and my physician over in Germany, along with the continued support of a rare and dedicated French doctor over there in Paris. Finally I thank two doctors over there in the UK for listening. I salute them all as men and women of true honour.

Several people wrote to ask what happened with antiretrovirals for my daughter and me. Ali and I plateaued without recovering fully. After the initial improvement, there was really no way to know what was happening. We both had a very mild flare of symptoms for the first six weeks and then a noticeable increase in energy and resilience. We started with AZT and Isentress, then switched the AZT to Viread a year later. Ali stayed on the two drugs for three years, not wanting to rock the boat, as she was doing relatively well. I stopped the Isentress after about a year and half and took Viread alone after that. We both improved during the three years we took antiretrovirals, but we were doing lots of other things documented on this blog. Since there was always the possibility that we might do better without them, eventually we decided we should find out. As it turned out, we didn’t decline when we stopped. I had some trouble coming off Viread, because my always labile blood pressure went crazy when I stopped, twice. Go figure. In the end, I weaned without any sort of noticeable decline. When we started, we were all so hopeful. Judy believed we’d be able to monitor viral load in a year, but it wasn’t to be. Our combined copays were breaking the bank and after three years, with no way to monitor and able to stop, it just didn’t make sense to continue. I would consider antiretroviral drugs again if either of us crashed completely.

My experience treating six very informed patients was similar to what other doctors have reported, 50% improved subjectively. Two had adverse reactions to Viread, including one who had responded initially; both resolved quickly when the drugs were stopped. Two patients continued long term, one on two drugs and one who opted for Viread monotherapy. I didn’t see anything dramatic enough to make me very encouraged though. I had successes with other things that were similar in scale with less risk to the patient and the doctor. However, it’s possible that tinkering with lower doses and less than every day regimens would make the drugs we have more useful for ME/CFS, even if they were designed for a virus we don’t have. Although we do not want to encourage resistance to the drugs, it’s possible that a small dose of a reverse transcriptase inhibitor would work for us. I heard from a doctor in Europe who reported complete recovery in 2011 after nine months on micro dose AZT (20-30mg/day). I don’t know how it turned out long term, but will write to him and ask.

Dr. Michael Snyderman is still doing remarkably well, still able to work in his hematology oncology practice at 75, controlling his cancer like a chronic disease, specifically like AIDS. He has been taking HAART for over 6 years, having twice passed his median survival, meaning there was less than a 25% chance that he’d still be alive by now. I will share his data here in the near future. He is still hoping to collaborate with Roswell Park Cancer Center in his hometown of Buffalo, NY to help patients who have cancer and who have a poor prognosis. The same viruses that infect cancers infect the immune system.  If cancer patients benefit as he expects they will, initiatives can be made with the neuroinflammatory disorders including ME/CFS. There is now a reliable virus detection methodology, ViroCap invented by the Wylies at Washington University and the Wylies are interested in collaborating with this research.

These are leads, the only leads we have. If drugs developed for a completely different retrovirus have some activity against a disease, think what could happen with some attention to the process that is actually occurring. The technology, next generation sequencing, already exists to begin to answer our questions, but the various software platforms that analyze the data are still in their infancy. The metabolomics studies are happening because there is a new toy. There are going to be lots of new toys in the near future. It already didn’t happen by random doctors prescribing off label. Since it wasn’t a slam dunk, it needs to be formally and properly studied.

It is possible that the metabolites that Naviaux et al have identified as a potential diagnostic panel might be useful for monitoring success with antiretrovirals. Dr. Naviaux has answered questions here, stating that he thinks the use of antibiotics and antivirals aren’t indicated and I mostly agree with him, planning to share my thoughts on treatment in a future blog.

I continued to go slowly uphill after I last blogged about ME/CFS almost two years ago, but nothing like a full recovery. I was able to work a little and I was able to ride on the back of a tandem, close to a thousand miles in two years according to Strava, half of it on dirt. Still lots of symptoms, but a life, where once there wasn’t one, plus a way to get endorphins. My recovery was slow after exercise; I felt drained the next day, but nothing like full blown PEM. I was still maintaining the fantasy that someday I would recover fully. But a year ago, while hiking, I twisted my ankle and broke my distal fibula. It was a minor fracture that should have healed without problems in 6 weeks. Instead I got RSD/CRPS (reflex sympathetic dystrophy/complex regional pain syndrome), a very challenging and painful condition. It takes most of my energy just to cope and I’ve been out of commission since it started, able to attend only to my own treatment (HBOT).

After 5 years of managing patients, I had to retire completely. I only worked with a very small number of patients, scattered all over the country, who saw me in person once a year in Hawaii or Arizona, but I got to know them very well, because most of the contact was electronic, day to day, moment to moment even, and that works well for ME/CFS patients. It was enough to learn quite a bit about the spectrum of disease, what works and what doesn’t, especially given that almost everyone I saw had been around the block and came with voluminous records, having failed treatment with the best. I’d like to share my impressions while still fresh, so intend to keep blogging, if I don’t get too beat up over this one ;-).

Today’s song from Les Misérables

Recovery In Neverland

Even though the last blog was the least controversial I’ve ever written, it managed to ruffle a few feathers. On the one hand, it couldn’t possibly be as simple as a diet cure and, on the other, it is too hard to implement, especially if you are sick and short of money. And what about retroviruses?

I am not cured. It is a relapsing, remitting illness and I am experiencing a remission. I am not asymptomatic, but much, much better. My husband and I have ridden our tandem 180 miles so far this month. Our rides are quickly getting longer, faster and more challenging. My husband said I have never worked harder. I don’t know if that’s because I want it more, or because I finally fixed my rubidium deficiency;-). No doubt a real doctor would say I finally decided to get off my ass;-). But anyone with real knowledge of the disease knows what a profound change has to occur for an ME patient to return to exercise after nine years.

Ali also has noticed improvement with respect to her physical abilities. She went to an hour long yoga class a few days ago with no PEM and expects to continue. She is living away from me, something neither of us thought possible just a few short years ago.

It isn’t just the diet. The diet happened to us in the context of a slow recovery over a number of years during which several treatments were contributory, all documented on this blog. Antiretrovirals, oxygen, Deplin, at one time Actos, at another modified Meyer’s cocktail IVs, metformin and Prometrium for Ali, prior dietary modifications and ever more awareness of the importance of biotoxin avoidance. I believe all of these things have helped to tip the balance towards recovery. When you are treating an incurable disease, it is necessary to look for therapeutic synergy.

As to the diet being hard, some of the biggest things aren’t too hard. A daily smoothie, big plates of organic greens, bone broth from clean grass fed animals. Buy organic. Try your local CSA (community sponsored agriculture) who sometimes deliver. Try eliminating gluten and dairy for three months. Consider nutrient density before eating something. Don’t try to change everything at once. Pick one thing and do that, then add to it. It is more expensive to eat this way. If it is too expensive, I am thinking the food is more important than supplements, on which most patients spend a lot of money. I am increasingly suspicious of things that come in pill form, including supplements.

One of the really interesting things that has happened to me on the Wahls diet is I am not tolerating B vitamins at all, finding them overactivating and sleep disrupting, after taking Deplin for years. I presume this is because I am getting what I need from my food. Can we infer from this that my methylation status has improved? Take a look at the numbers midway through this article by Dr. Wahls: Maximizing Nutrient Density for the Modern Day Hunter-Gatherer.

In addition to a relatively small number of known required nutrients, whole food contains thousands of compounds which work together in ways we do not begin to understand. Supplements supply an excess of a single nutrient. In the case of L-methylfolate, the idea is to overcome an enzyme deficiency by supplying the activated form of the nutrient folic acid to prime the pump of essential metabolic pathways. The deficiency occurs more often in the presence of certain genetic mutations, or SNPs, but remember, the problem is most often not caused by the genetic make-up of the individual, who was healthy once, but by epigenetic changes that have occurred. Also remember that methylation silences retroviruses.

I still think retroviruses are at the bottom of it, endogenous and/or exogenous. I will prevail upon Dr. Snyderman, who has lots to say on this subject, to give us an update in the near future. There is a growing body of literature to support the association of activated HERVs with various diseases. There are even a few intrepid researchers still pursuing novel retroviruses in chronic disease, working at the edge of our current understanding. Andrew Mason‘s betaretrovirus associated with primary billiary cirrhosis, clinical trials with antiretrovirals ongoing, Sidney Grossberg‘s JHK gammaretrovirus which he has identified in CFS patients, and Hervé Perron‘s MSRV, particles from HERV-W transcripts, with an immunopathogenic envelope protein, severity of illness correlates to viral load, replication competence still unknown. “Most HERVs are unable to replicate but MSRV expression associated with reverse-transcriptase activity in MS would explain reported DNA copy number increase in MS patients.” from The DNA copy number of human endogenous retrovirus-W (MSRV-type) is increased in multiple sclerosis patients and is influenced by gender and disease severity.

The possibility that animal retroviruses are the root cause of the enormous increase in chronic neuroinflammatory illnesses, autoimmunity and cancer in our modern world has not been ruled out, just because the particular sequence called XMRV has been put to bed. In fact, in figuring out where XMRV came from, created in a lab using techniques in use every day all over the world, a can of worms has been opened. How many times have similar organisms been created? How many cell lines commonly in use produce infectious virus that can spread airborne through a clean lab, as XMRV does.

Given that retroviruses recombine and rescue each other, that under certain conditions HERVs activate to produce viral product, that the environment is full of the very toxins used to amplify retroviruses in the lab and that high risk biotechnologies have offered up so many chances for new retroviruses to infect humans, it seems more likely than unlikely that it has happened, and more than once. After all, we have been injecting adventitious retroviruses into people for 80 plus years in combination with other live viruses. We think nothing of fusing human and mouse genetic material to produce monoclonal antibodies that are given to immunocompromised people. Passaging human tumor tissue through immunodeficient mice, gene vector technology, genetically modifying animals to produce human proteins for IV administration (Atryn) are all very high risk things to do. Lots and lots of chances. Hubris allowed it. Money drives it. How could the legacy of all that science be that half of everybody has a chronic illness, including children? Who wants to know that?

Injected into monkeys, XMRV causes a low level latent infection, which isn’t communicated by transfusion. However, Dr. Mikovits found other sequences in patients besides XMRV. Here is a slide from her recent lecture at Dr. Enlander’s conference showing just that.

The Exotic Biology of XMRVsfinal slide 10

Of course, she doesn’t have her notes, so all of the unpublished work she did is lost to us. Meanwhile, the WPI continues to suck up a big chunk of the government dollars spent on our disease, while their co-founder awaits jail for his felony convictions.

$450,000 of taxpayer money was spent on the specimens collected for the Lipkin study, which was negative, as expected. The good news was that Dr. Lipkin was going to use those specimens to answer some questions. I guess he couldn’t get funding. Instead those specimens have gone to Dr. Peterson, who is raising money to look for evidence of arthropod borne disease, even though the collection criteria for the specimens specifically excluded Lyme Disease. How’s that for looking under the streetlight?

Meanwhile, as a patient community, we are back to case definitions, an obfuscation if there ever was one. A case definition is an exercise in futility, because the disease isn’t one thing. ME/CFS is a garbage pail diagnosis, somewhere to put all those patients who feel awful, have non-specific immune dysfunction and secondary mitochondrial failure, with nothing else to define their illnesses. Many roads lead to Rome. The question of causation is simply too complex for our current scientific methods. The ability to analyze huge amounts of genetic material cost effectively is coming, but it isn’t here yet. It may turn out that the specific retroviral sequences involved are found in particular families or groups of people with certain environmental exposures, e.g. certain chemicals or vaccines.

With the burying of XMRV has come a resurgence of Lyme Disease as The Cause. The CDC recently admitted that they were low on the number of annual cases by a factor of ten, right on time for the release of Baxter’s new vaccine and Lyme test. The CDC’s admission is unfortunately a boon to ILADS, a renegade medical society based on an incestuous relationship with a private lab, to which they refer and then use the unvalidated results to perpetuate their mythology: Patients congratulated for “herx” reactions to antibiotics, rather than recognizing it for the damaging cytokine storm that it is. Then there’s the one about how enough antibiotics in the right combination for the right duration can eradicate it, despite all evidence to the contrary. And the one about how chronic Lyme Disease is a distinct entity from ME/CFS, despite the fact that the two groups are clinically indistinguishable without test results from this one particular cash only lab whose results no other lab can duplicate. And then, if they happen to get a negative test, which is a rare event, the most imaginative of all, seronegative Lyme can be diagnosed clinically, even in people with no risk factors. It’s a scam and a dangerous one. I saw this yesterday: Is Lyme Disease Contagious? Clues Hint That It May Be A Sexually Transmitted Disease, quoting no other than Dr. Raphael Stricker, the most published of the so called LLMDs. Here is what the Office of Research Integrity at the NIH has to say about him (link):

Raphael B. Stricker, M.D., University of California at San Francisco. An investigation conducted by the University found that Dr. Stricker falsified data for a manuscript and a PHS-supported publication reporting research on AIDS. In the manuscript, Dr. Stricker selectively suppressed data that did not support his hypothesis, and reported consistently positive data whereas only one of four experiments had produced positive results. In the publication, Dr. Stricker reported that an antibody was found in 29 of 30 homosexuals, but not found in non-homosexuals. However, Dr. Stricker”s control data, which he suppressed, showed the antibody in 33 of 65 non- homosexuals. The falsified data was used as the basis for a grant application to the National Institutes of Health. The ORI concurred in the University”s finding. Dr. Stricker executed a Voluntary Exclusion and Settlement Agreement in which he has agreed not to apply for Federal grant or contract funds and will not serve on PHS advisory committees, boards or peer review groups for a three year period beginning April 1, 1993. The publication “Target platelet antigen in homosexual men with immune thrombocytopenia” in the New England Journal of Medicine, 313: 1315-1380, 1985 has been retracted (New England Journal of Medicine, 325: 1487,1991).

ME/CFS, Chronic Lyme Disease, mold illness, MCS, fibromyalgia, GWI, all have pretty much the same symptoms. Lots of tunnel vision going on in each group. A retroviral hypothesis is the most parsimonious explanation for all of these diseases, which didn’t exist or were very rare when I went to medical school 35 years ago. Dysautonomia, now common, wasn’t seen then except rarely in advanced diabetes. A retroviral hypothesis fits for ASD also. This very brief distillation is all referenced elsewhere on this blog. However, even when one turns to the literature for answers, you have to figure that a very large proportion of it is wrong due to mistakes, contamination and fraud (lots of that going around). Why Scientific Studies Are So Often Wrong: The Streetlight Effect. So whatever cohort you fall into, which may depend more upon which doctor you go to than anything else, you get to choose between neglect by conventional doctors and expensive overtreatment by the “experts”. My advice is avoid doctors and eat your vegetables.

Tonight’s song: We Shall Overcome by Pete Seeger

The Doomsday Scenario

An important new paper has been published: Xenotropic MLV envelope proteins induce tumor cells to secrete factors that promote the formation of immature blood vessels. Muegai et al. The et al includes Pathak who published the paper with Coffin which identified XMRV as a virus created in the lab. From the title you might think it is about cancer and blood vessels; however, look at the last sentence of the conclusion:

… the results suggest that xenograft approaches commonly used in the study of human cancer promote the evolution of novel retroviruses with pathogenic properties.

Here is the crux of the matter:

The evidence that XMRV was generated as a consequence of studies aimed at elucidating the pathology of human disease is disturbing in that it highlights long feared dangers of use of xenograft tissues in clinical settings, including porcine valves [14,15]. Of even greater concern, the results support the idea that attempts to develop better therapeutic interventions might inadvertently promote the development of pathogenic viruses. However, the following observations refute this possibility: First, although xenotropic and polytropic MLVs have been described as far back as 1970 [16,17], as of yet there has been no validated evidence of human infection by this class of viruses. Second, despite intensive investigation of XMRV by many laboratories [1,18,19] there is no evidence that XMRV is capable of inducing transformation of cells [1,20], although there is recent evidence showing that XMRV infection of LNCaP cells resulted in modest increases in proliferation, and invasion of cells into Matrigel in vitro (Pandhare-Dash et al. [4,21]).

Are you reassured? Their first point is a basic logical fallacy. Absence of proof is not proof of absence. Nobody ever found it, so it isn’t there. Their second point says XMRV, the manmade gamma retrovirus about which we know the most, isn’t dangerous, maybe. What a relief. Yet even they are now admitting, XMRV is not the only one out there. They found a new one for this paper. So now there are at least two, and no longer such a remote possibility.

The studies described herein address these questions, and show that at least one other XMRV-like virus exists, and that the virus evolved the ability to infect human cells and to express gene products that impact tumor pathogenesis.

But no need to panic. The folks that brought you this mess, will figure it out one of these decades. Recombinant Origin of the Retrovirus XMRV, now a year old, where they argued that the chances were “vanishingly small” that XMRV wasn’t created in a lab in the mid 90’s, while studiously ignoring the fact that other similar events were in fact quite likely. So they are finally admitting that the chances aren’t so small, since there have been so many chances. Now there are two. Or is it three? This paper, identified a cell line in use at the NCI that produces another infectious XMLV: The Human Lung Adenocarcinoma Cell Line EKVX Produces an Infectious Xenotropic Murine Leukemia Virus.

Inductive logic is forbidden. No connecting the dots allowed. And who can blame them, when it has been recently demonstrated that dot connecting gets you burned at the stake in the scientific community. Have to start with what we know and carefully build step by step, hoping that the pyramid ends with something coherent. God forbid, we should decide that we have learned something new, something so big that a top down approach should be employed. It is so big in fact, it could explain why 133 million of our people and 55% of our children have chronic illnesses in the US, and why 20% of adults in the developed world have an autoimmune disease. ME/CFS is little. It is time for a revolution. It is an emergency. I wrote that same sentence in 2010 and nothing has changed.

How many young people have been felled by ME/CFS since then? I know about one teenager that was treated in 2010 with antiretroviral drugs and recovered. His mother posted on this blog anonymously at one point, but was presumably prevented from going public. Sick for 8 months, better in 6 weeks. Treated for 6 months and remained in remission off treatment, as far as I know. How did that case report not  make it into the literature? It is unconscionable. I am sick of hearing about how an N of 1 is irrelevant. An N of 1 is called a case report. If important enough, it leads to a pilot study and then a clinical trial.

This burden of chronic disease in children is our replacement for the 20% that used to die before the age of 5 of infectious diseases. So instead of dead children we have live disabled ones. What is going to happen to all these disabled children? Whether the cause turns out to be an activated HERV, or an exogenous simple animal retrovirus (alpha, beta or gamma), the use of antiretroviral drugs is a logical thing to try. It is unfortunate that the only drugs available to us were developed for a retrovirus that is phylogenetically dissimilar from the simple viruses in question here, but even so, AZT, Viread, and Isentress have had a positive effect on a number of patients with ME/CFS, incomplete and, after a while, not clearly worth it, but there is a noticeable positive response in a percentage of patients, which appears annecdotally to be greater than placebo. That should be a beacon in the fog, not a reason to make the drugs taboo. Dr. Snyderman’s cancer is stable on full HAART. Shame on both the scientific and medical communities for ignoring him.

What would happen if you gave antiretrovirals to children at the time of an autistic regression? I know your government wants you to believe that the astonishing increase in ASD, now acknowledged by CDC at about 2%, is because we got better at diagnosing it. While that is undoubtedly partially true, since it is now a common disease, it is insulting to our intelligence to reassure people on that basis. It is only 2%, so no worries; your individual chances of having an autisitic child are still low. But what are your chances if you have CFS or a first degree relative with CFS, or autism, GWI, Lyme Disease, PANDAS, RRMS? These diseases are running rampant. Certain families bear an incredible burden of illness, including early aggressive reproductive and hematologic cancers. It is frightening, even if you look at only one disease at a time, but as part of a preapocalyptic whole involving the health of the species? Terrifying. Virus, injury, genetics. Many perfect storms.

Whatever happened to vaccines being inappropriate for people with immunological abnormailities? Given that patients with various immunological problems now encompass a very significant proportion of the population, the entire vaccine program needs to be seriously reevaluated. Continuing to give ever increasing immunological challenges to a patient population with seriously declining immunological health, for diseases that are extremely unlikely to cause long term morbidity or mortality, is no longer clinically justifiable in my opinion. It is medically incorrect and unethical at this point to take the current vaccination schedules for civilians and the military at face value, especially in light of the implications from this paper, and the recent acknowledgement that GWI is not in fact limited to the veterans of Desert Storm, but still occurring.

The upcoming FDA meeting will no doubt give mention to many more dangerous treatment options than AIDS drugs. AIDS patients got the best. Lots of very clean drugs to work with that cost billions to develop. There are probably many drugs on the shelf that didn’t work well enough for HIV, but might have activity against the viruses we are dealing with. My guess is antiretrovirals will not even be on the table for discussion.

IT IS STILL HAPPENING. Every single day. New people getting sick that should be treatable. The scientific community should not be allowed to take their own sweet time about this. It is not acceptable in the midst of this pandemic for them to withhold anything clinically relevant, whilst expressly trying to prohibit the off-label use of legal, safe drugs that might help patients who are in dire straights, patients suffering beyond belief, for whom there is no meaningful treatment. But the culture is to “burn at the stake” any scientist that steps out of bounds, as we have already witnessed. Doctors too, for that matter.

Look at the tunnel vision in this paper. It is all about cancer and xenografts. No mention that gamma retroviruses cause neuroimmune diseases in vivo, as well as cancer. No mention that there are aspects of modern biotechnology that could be causing the same or worse problems than the ones described in this paper, notably hybridoma technology. And nothing about vaccines, the sacred cow, which contain foreign DNA and are parenterally introduced, given in ever increasing numbers and combinations to an ever more vulnerable population. Live attenuated vaccines are grown in cultures known to express animal retroviruses, e.g. chick embryo, mouse brain culture, monkey kidney cells. Here is a list of vaccine excipients and culture mediums used for production from Wikipedia. And that’s now. Can you imagine what the technology was like in the 50’s, 60’s and 70’s? Viruses successively passaged through mouse brains, passaged meaning brain sucked up with a big needle and injected into the next mouse, then eventually the resultant sludge was injected into or fed to people. Now we can tell what we are doing and we are still doing it. Chemical Induction of Endogenous Retrovirus Particles from the Vero Cell Line of African Green Monkeys.

The paper under discussion mentions the “plasticity” of these viruses. They recombine and rescue each other. But scientists aren’t allowed to connect the dots, even when obvious, as it should have been a couple of decades ago, since it was known by the 70’s that these viruses were there. Here, written by a couple of the scientists who have recently contributed to the distortion of the true significance of XMRV, telling us in 1995 what they feared, but did nothing about. I have posted it before and try not to repeat myself, but in light of this paper, it deserves to reappear.

CoffinStoye95

The assumption that these viruses could not harm humans was made on very shakey ground; everybody was having too much fun tinkering to be stopped by a few qualms. There were a few absence of proof experiments. What hubris! Now, this is the only explanation for ALL of the observed phenomena, encompassing the environmental and genetic aspects, the variations on a theme so clear to see in the various patient cohorts. The Lipkin paper came up with positive serology in 6% of the study population, patients and controls, to a very nasty defective murine retrovirus that produces Env. That particular mystery should be a high priority by now. Why is the 6% not being studied intensively? They found positive serology in human beings to pathogenic retroviral Env in Lombardi et al, they found it in Lo et al and they found it in the Lipkin study. The 6% may be, probably is, only one of many. But no need to panic.

On the personal side, as I reported last time, I went back on Viread. I again noticed an uptick in function and ability to withstand stress 6 or 7 weeks after starting it. My blood pressure is now well controlled on additional antihypertensive medicines, in fact better controlled than at any other time in my illness. I started Isentress a couple of days ago and plan to add Kaletra very soon. Ali remains remarkably stable on Viread and Isentress for 3 years now. Her life is very full. She is productive and happy. Her most limiting symptom remains MCS.

I just returned home after a trip to Tucson seeing patients. The first 5 patients I saw were 3 women almost exactly my age and 2 men, both 48 years old and sick for almost four decades. That strikes me as a bit much for coincidence. I have noticed for years, and especially since I’ve been writing this blog, that my December 1953 birth date seems to be at the peak of a bell curve for middle aged ME/CFS women, suggesting something went out horizontally. Was it when we were born? We received the oral polio vaccine, on a sugar cube, but we wouldn’t have all been the same age when we got it, since it wasn’t released until 1961. And we know that there were outbreaks before the polio vaccine. Papers have documented certain years with peak waves of onset. All of this fits with the idea that it has happened multiple times and each time, it looks a little different, e.g. average age of onset, gender susceptibility, most prominent symptoms, thus the misconception that it is a heterogeneous problem.

Just as there were many retroviral invasions in the distant past, in this paper we have emerging evidence that it has happened again, on a grand scale, over a very short period of time. There are most likely already some viruses that are endogenized in families, since it has gone unchecked for so long. The very high incidence of PCOS in young ME/CFS women may be consistent with a retrovirus invading the germline. When I first wrote about this possibility, I thought it was irreparable, a true doomsday scenario, but it is not. Evolution will deal with it, even while our fertility is dropping at an alarming rate. Deletions will occur, possibly in not very many generations. We will learn how to stay methylated to keep our viruses quiescent. We will eventually learn to manipulate epigentic factors in our favor. But like carbon emissions, we need to stop it now. A retrovirus or pieces of a retrovirus now and again, repeated exposures to endocrine disruptors, synthetic hormones and steroids, add a little Bt toxin, a “cover your ass” CT scan and a couple of radioactive tracers for worthless imaging, courtesy of your doctor, and voila! A recipe for the disaster that is occurring, while nobody panics.

Today’s song: You Haven’t Done Nothing by Stevie Wonder

Twists And Turns

The world will not be destroyed by those who do evil, but by those who watch them without doing anything. ~ Albert Einstein

When I started this blog, I promised to share my journey as it unfolded, before knowing the outcome. My goal was always to explore and learn, not convince anybody I’m right, since I clearly don’t know. So here’s what’s happened since I last wrote. A day after I wrote the last blog, I ran out of Cozaar (losartan), forgot I hadn’t put it in my pill case for the whole week and missed two doses. Before restarting it, I checked my blood pressure and it was 212/127. I’ve missed losartan other times in the last few years, but never with such a severe elevation and always responsive to restarting the med. But this time, my pressure stayed ridiculously high, even after adding a second drug, amlodipine, which I have used as a second drug before, but haven’t needed in several years. I have a long history of labile hypertension and a period of persistent severe hypertension was the problem that ended my Emergency Medicine career in 1996.

It happened about a year after my first symptom, following a period of unrelenting stress. The blood pressure elevation came with a feeling of doom. The numbers were often high, for most of a year, despite all the drugs my doctors threw at it. Initially my academically inclined physicians were excited by creepy medically unexplained symptoms in a colleague. They thought I had something cool, like a pheochromocytoma or carcinoid. They sent off all their esoteric tests and when it was all negative, or almost negative, they concluded that I either had a world class case of white coat hypertension or was crazy and not taking my meds. Indeed, the independent medical exam ordered by my disability carrier concluded I could return to the ER if I took my antidepressants like a good girl, despite my protestations that I wasn’t depressed and my blood pressure was very high at home too, with nary a white coat in sight, besides my own.

It is a long, sad story, filled with injustice and stupidity, mine and my doctors’. I’ve written some of it here before, but I’m mentioning it again now, because this current episode was so similar to what happened then. The hypertension occurred in the context of an abnormal stress response and autonomic dysfunction/instability. Because my dysautonomia occurs in the setting of hypertension, I don’t have POTS per se, but a variant. The autonomic nervous system wasn’t even part of the discussion back then, and here is why. The first paper in the medical literature on POTS, or orthostatic postural tachycardia syndrome, was published in 1993, only 2 years before my first symptoms and had no penetration as yet to an average work-a-day doc: Idiopathic postural orthostatic tachycardia syndrome: an attenuated form of acute pandysautonomia?

Even by 2002 when my husband developed severe dysautonomia, it was not part of the common medical lexicon, as it is beginning to be now, finally. Recognizing autonomic nervous system dysfunction as a core deficit in Gulf War Syndrome sufferers is a big step from our old concept of PTSD. So what do we think? Was it a new phenomenon? Or were all the doctors who came before me such poor physical diagnosticians that they missed it without the benefit of tilt tables?

As I have previously reported, I did not have viral onset CFS, but a very atypical onset and course, which was clinically more similar to Gulf War Illness than ME or CFIDS, as it was called then. If I’d been in the military at the time, instead of a civilian working in a trauma center, I might have landed in that bin. Now, 20 years later, it is finally starting to occur to the scientific and medical communities that the problem is in fact more extensive than the 250,000 soldiers who got sick at that one particular place and time: Report: New veterans showing Gulf War illness symptoms. Could this be a prelude to asking questions about the pathophysiological similarities observed in the various neuroimmune disease cohorts, diseases which were rare or unknown just a few decades ago? What risk factors are shared by vets with GWI-like illness, autistic children and patients with ME? Why is that question not being asked in the context of the public health emergency that it is?

So I’ve had problems with my BP all along, but nothing as severe or sustained since way back then, until now. I’m intolerant of most classes of antihypertensives, but have evolved an approach to BP spikes that works for me, basically temporizing until the episode resolves on its own, since experience has taught me that aggressive treatment will make me bottom out suddenly at some point. I’m better off accepting a mild elevation than pushing my luck, with such an unstable baseline. Hypotension is probably worse. Certainly, it feels worse. I did all the things this time that usually help, and everything else I could think of. I mentioned in the last blog that I had reduced my dose of Deplin as I was feeling sensitive to it while things were getting worse in December. I went back to my old dose of 7.5mg to see if that was the problem. Mood improved, but blood pressure didn’t. Went up to max dose on the newly added calcium channel blocker and took supplements and herbs which support vasodiliatation and relaxation. High dose Epsom salt baths. Biofeedback. Everything worked briefly, but still with regular readings above 200 systolic, plus the continuing waves of dread I was experiencing, so similar to the beginning of my illness. I was trying to figure out which 3rd drug to add soon if something didn’t give, knowing that all the choices were likely to be problematic.

Faced with only unpleasant choices, and since the problem was related, at least temporally, to discontinuing Viread, I decided to restart it. I was in no way excited or positive about it, but felt it was the least of the bad choices. Since stopping it, I had been feeling better in some important ways, with notably less nausea and possibly feeling a little stronger. So despite a strong preference for going ‘au naturelle’, and tired of being a guinea for drugs developed for patients with a different disease by drug companies with no interest in ours, and very tired of copays, I nevertheless found myself surprised to be back in a place where restarting antiretrovirals was looking like my best option. When Ali and I first started arv’s in early 2010, I believed we had a virus which had been confirmed at 3 labs, including the Cleveland Clinic and the NCI, plus published supportive in vitro testing. It made sense then, but now? I spend my energy working on natural solutions for patients. My own goal was to get off any drugs I possibly could. But the blood pressure wouldn’t give, trumping all my reasoning. I went back on…

On the 5th day back on Viread, with a resurgence of nausea worse than before I stopped, I was cursing drugs and drug companies, when my symptoms broke, like a fever. The high blood pressure let go, as did the other symptoms that came with it in a chicken or egg fashion, such as the fight or flight feeling from too much sympathetic tone. It isn’t just a number on a blood pressure monitor, but part of an entire symptom complex. Since things turned around 6 days ago, I’m doing better than before I stopped it in the first place. I have no logical explanation for that. BP is adequately controlled, at least pretty good for me. I am planning to restart Isentress in a week and I am considering lopinavir as a 3rd drug. See the last blog for Dr. Snyderman’s data demonstrating his response to lopinavir. Kaletra is currently part of a regimen undergoing a clinical trial for a beta retrovirus, similar to MMTV, in PBC (primary biliary cirrhosis), with evidence for growing, slowly, as is always the case when it comes to investigations of human retroviruses other than HIV.

Why might this recent experience of mine be interesting to other ME/CFS patients? Hypertension is not usually a finding in this patient group. However, vascular instability is. Increased sympathetic tone is. An abnormal stress response most definitely is. All of that apparently got worse and now better again, in an A – B – A fashion, taking, stopping and restarting Viread. And, distinct from my usual predicament, I could actually measure something. Numbers! BP now coming into line after 11 days back on, starting to decrease the second antihypertensive, didn’t have to start a 3rd class with intolerable side effects. I really wanted off, but I am not afraid of these drugs, so here I am again, and so far, so good.

After watching me twist in the wind for the last couple of months, Ali is planning to sit tight with respect to her antiretrovirals, enjoying her good fortune and relative stability. For those readers who are interested in her regimen for PCOS, she has decided to discontinue Actos for the long haul, even though it helps her in the here and now. She has started a slow wean, planning to increase metformin if necessary.

Having learned the hard lessons personally with respect to unvalidated tests from small labs with special interests, I came across this on Medscape and think it needs to be shared: Lyme Culture Test Causes Uproar. The link works if you have an account, but here is the first paragraph and exerpts of the article about a culture for Borrelia burgdorferi from a lab called Advanced Laboratory Services:

A new chapter in the Lyme disease controversy opened in September 2011 when Advanced Laboratory Services, Inc, announced the commercial availability of a new culture test for Borrelia burgdorferi. Some Lyme patient advocacy groups and physicians began encouraging patients to have the $595 test, but others are concerned about the early commercialization of the still-unvalidated test. This concern may result in changes to how the US Food and Drug Administration (FDA) regulates so-called “homebrew” or laboratory-developed tests (LDTs)…

Soon after Advanced Laboratory Services’ initial public announcements about the new culture test, emails and public statements attributed to Dr. Burrascano began appearing on Lyme-related Internet sites, including comments that the culture test was approximately 94% sensitive and 100% specific.

Dr. Burrascano told Medscape Medical News that the validity of the culture test was established using blood samples provided by physicians and that the identity of Borrelia was confirmed by its ability to grow in Borrelia-specific media, by its characteristic appearance on darkfield microscopy, by reacting to published Borrelia-specific polyclonal and monoclonal immunostains, by DNA polymerase chain reaction (PCR) at 2 different loci, and by direct DNA sequencing. These data are so far unpublished…

And here is the disclosure statement at the end of the article:

Dr. Burrascano has disclosed no financial interest in the laboratory, in the Borrelia culture, or in any intellectual property and receives no commissions from the tests. Dr. Burrascano is senior vice president of medical affairs and medical director for Advanced Research Corporation, a contract research organization with the same president and corporate address as Advanced Laboratory Services, Inc. Dr. Mead And Dr. Green have disclosed no relevant financial relationships.

Oy vey. Here we go again. Another unvalidated test to justify bad treatment. What’s wrong with the unvalidated tests they’ve been using all along? The ones that are almost never negative for various tick borne diseases? And this, hitting the presses coincident with the WPI promoting Dr. De Meirleir’s lecture, yet another doctor with a history of profiting from unvalidated lab tests. I think I’ll stop now, so my blood pressure stays down, and end on a positive note.

I just had the pleasure of reading Hillary Johnson’s very fine piece in the latest edition of Discover Magazine, available to non-subscribers soon in print at a newsstand near you. Her most excellent account of the XMRV saga, “Chasing The Shadow Virus” sheds journalistic light on the events that occurred and raises desperately needed awareness for our shadow illness. I was close to the events, have my own perspective and strong opinions about what happened and why; this article rings true to me, maybe because I have this same quote on my phone in a text message, “I still see the footprints of a retrovirus..” Yes, Pandora, the box is open forever. Denial is dark and powerful, but eventually, the truth will shine through.

We can discuss possible esoteric mechanisms from now until the cows come home as to why Viread stops an inflammatory process which causes my blood vessels to go into spasm: Brain Microglial Cytokines in Neurogenic Hypertension. But why not start with the most likely explanation? It is a drug which inhibits retroviral reverse transcription. Certainly it is a real possibility that it is doing what it was designed to do.

 

Big Yellow Taxi – Joni Mitchell

“2013 will be a year of optimism, opportunity and HOPE”

Dr. Judy’s bankruptcy was final yesterday. She has lost everything financially. Let’s hope the vengeance is now complete. Her homes are being sold and she still doesn’t have her notebooks. She isn’t working as a lab scientist because of the Whittemore’s defamation of her character, despite Dr. Lipkin’s support.

And still the WPI asks for money from the community? For what? They have not published one paper in the year and a half since Dr. Mikovits was fired. Instead they have spent a bunch of money to ensure she is completely stopped. What kind of people would do that? Why wouldn’t they want her to be able to work? To live her life? She gave them five years, trying to help their daughter, but wanted to follow the truth instead of the money, so they did everything they could to destroy her. What’s in those notebooks that they are so concerned about? There is no intellectual property, since XMRV is not a human retrovirus, but a lab contaminant, so there must be something incriminating, something that leaves them vulnerable. But they won. They have the notebooks.

From a big picture perspective, as affects the patient community, the whole misadventure was so wrong, it’s hard to count the ways. We were robbed, on many levels. From a personal perspective, it is still incomprehensible to me that the promise we felt, back when Dr. Judy was being promoted like a rock star, has turned to dust. However, she has told me repeatedly that they have taken her money, but they can never take the most important things from her. From an email last night, after reading my draft for this blog, copied here with permission:

The copies of my notebooks prove my total innocence. I did my job and beyond…their actions prevented the truth and prevented me from getting work, and not only me, my students as well…but as you say it robbed the scientific and patient communities of data paid for by federal dollars and donations to a “non-profit” institution. I could NOT LIE or ALLOW the truth to remain hidden or support those who would not tell the truth in order to take advantage of a vulnerable patient population.

Their intellectual property was unraveling when it was found that XMRV was a Silverman lab contaminant..what they are and were afraid of is that they will be held liable for the fraudulent testing.. Lombardi and the Whittemores lied for 3 years and they all had a financial interest in VIPDx. There simply cannot be intellectual property or diagnostic testing for a virus that does not exist in any natural organism!!!

From my personal perspective it is incomprehensible, that in the United States of America, all of my constitutional rights can be denied in order to cover up the truth  …They do not want me to work because they are that vindictive. They know I live for my work in cancer and neuroimmune disease and for patients everywhere. They know my work is my life ..they thought they could take my integrity..but you know what ..THEY FAILED!  Because Lipkin applauded my integrity and succeeded at showing the world what Silverman and Lombardi did to this patient population..THEY are the COWARDS and I have my honor and my integrity but most importantly of all, I have the support and confidence of the patient population, not just the CFS patients but the cancer, Chronic Lyme, Autism, MS ALS, Parkinson’s.. that is, ALL the patients to whom I have dedicated my life.

You see, my life was never about money and never will be. I am still working as a volunteer, I enjoyed coffee with two CFS patients yesterday and a cancer patient this morning, before I went with her to an appointment. I have never stopped being a patient advocate and will continue to be one in 2013. As one of my courageous friends with aggressive Parkinson’ s wrote in a Xmas card: “2012 was a year of change and loss,  faith..we all needed tremendous faith to survive 2012!! 2013 will be a year of optimism, opportunity and HOPE”.

Today’s song: I Will Not Be Broken by Bonnie Raitt

Recovery post-XMRV

I have a lot to say today and too little energy with which to say it, having just lost ten days of life force to red tape and worry about complying with arbitrary and capricious rules. Between states with differing regulations, plus the DEA which has yet a different set of regulations, I feel like I need a law degree to practice medicine. The system is broken and it is incredibly hard to take care of patients appropriately. When I complained about it recently to a doctor friend in an email, he replied, “My tombstone should read: He died of red tape.” It was always bad, but now nobody even pretends it has anything to do with caring for patients.

My recent month long intensive in Hawaii, treating two young women with ME/CFS and many years of disability, has further convinced me that the therapies I am using are able to tip the balance in favor of a slow climb to wellerness. For the most part, the things I’m doing are not enough alone, but together these therapies are synergistic and additive with continued use. Everything I am doing, and why, is documented and referenced on this blog. The search function in the header works well. The patients are fragile and a lot of tinkering is necessary.

In a nutshell, high dose pulsed oxygen (normobaric and mild hyperbaric) to improve inflammation and mitochondrial function, bioavailable folic acid derivatives for improved methylation (Deplin and folinic acid), sublingual or chewable methyl B-12, Vit D3 replacement, infusions of a modified Meyer’s cocktail including taurine, glutathione by IV push and neurofeedback. Most significantly, I see improvement from weaning inessential drugs, replacing synthetics with bioidenticals, and using herbal treatments instead of pharmaceuticals. In particular, medical Cannabis, if tolerated, for patients who live in a legal state, is a more effective and much safer alternative for chronic pain than opiod drugs, which damage the gut and cause central sensitization over time.

I consider diet to be a cornerstone of treatment. Food as medicine. I advocate a modified SCD diet, allowing whole grain rice, for patients with neuroimmune illnesses that almost always include a GI component in the symptom complex. I encourage SCD yogurt as a probiotic, superfemented to be lactose free and have a high live bacteria count. I also advocate eating organic, and no processed or GMO foods. In particular, avoid the excitotoxins, aspartame and MSG. Here is an important YouTube, by Dr. Terry Wahls, in remission from a wheel chair through dietary intervention alone:

I received some flak for saying that I’m a lumper, not a splitter, with respect to segregating subsets of patients, except for research. From the point of view of clinical medicine, breaking it down into separate cohorts doesn’t help me at all. It is all neuro-immune illness. The therapeutic options are extremely limited. The same things are worth trying in other cohorts also. Many, if not most, of the therapies that are being used in the ASD community are applicable to us. ME is on a continuum with MS and ALS. GWI and chronic Lyme Disease wind up clinically indistinguishable from ME. Fibromyalgia is a subset, not a separate illness. Again, the same treatments are applicable for the same reasons, even if the illnesses look a bit different.

The first thing that happens when there is a response to therapy is improved resilience. A push that would have caused a long crash, doesn’t, but brings minor payback only. At first most everything still feels crappy all the time, though some things have improved. Then some moments that aren’t so crappy creep in. Then some actual good moments. Crappy always comes back though, and when it does, it feels like falling back into the black hole. But it passes much more quickly than before. Improvement needs to be judged in fairly large increments of time, at least 6 months to be sure. One of the young women I treated last month posted this on her FaceBook a few days ago, “I had a good day today; I don’t think I’ve said that in 8 years :)”. That, after only a month of nearly risk free treatment. A long way from a cure, but relief is relief.

Here are some new noteworthy references with respect to oxygen therapy:

I had the pleasure of hearing Dr. Mikovits on Sue Vogan’s radio show, In Short Order, finally able to speak openly in public. The interview is archived here. I thought she was very clear and brave as she answered all the hard questions. XMRV is not a human pathogen. There could be other retroviruses as yet undetected. The mistakes made will inform future research. I personally felt abandoned after the Lipkin paper, subsequent interview by Dr. Lipkin and the press conference, but I am encouraged to hear that he and Dr. Ruscetti are still working on our behalf. They don’t know what the positive serologies mean.  It is tragic that she can’t go back and find out what went wrong so that everyone can learn from it, but much has been learned nevertheless. The only thing she said that I took exception with was that there is no evidence that XMRV has ever infected an animal. Persistent infection has been demonstrated in Macaques after parenteral introduction of virus, exposures similar to what has been happening regularly throughout the history of injected biologicals, dating back to vaccinations with the exudate of cow pox lesions, which certainly contained bovine leukemia viruses, similar to HTLV, and are artificially transferrable to other non-bovine species:

And take a look at this one: Long-Term Infection and Vertical Transmission of a Gammaretrovirus in a Foreign Host Species

So it isn’t XMRV. Other cell lines express other infectious animal retroviruses. Live attenuated vaccines are grown in animal cells that express exogenous retroviruses. Other vaccines contain DNA fragments. Here is the government’s list of vaccine excipients: Vaccine Excipient & Media Summary by vaccine and by excipient. That’s now. The early vaccines were attenuated in live animals. Mouse brains injected into people.

But, say it isn’t an exogenous retrovirus. Why then might antiretrovirals have an effect, in addition to the obvious elephant in the room? The drugs might be preventing transcription of activated HERV’s: Association of human endogenous retroviruses with multiple sclerosis and possible interactions with herpes viruses.

The hypothesis that human endogenous retroviruses (HERVs) play a role in autoimmune diseases is subject to increasing attention. HERVs represent both putative susceptibility genes and putative pathogenic viruses in the immune-mediated neurological disease multiple sclerosis (MS). Gammaretroviral HERV sequences are found in reverse transcriptase-positive virions produced by cultured mononuclear cells from MS patients, and they have been isolated from MS samples of plasma, serum and CSF, and characterised to some extent at the nucleotide, protein/enzyme, virion and immunogenic level. Two types of sequences, HERV-H and HERV-W, have been reported. No known HERV-H or HERV-W copy contains complete ORFs in all prerequisite genes, although several copies have coding potential, and several such sequences are specifically activated in MS, apparently resulting in the production of complete, competent virions. Increased antibody reactivity to specific Gammaretroviral HERV epitopes is found in MS serum and CSF, and cell-mediated immune responses have also been reported. Further, HERV-encoded proteins can have neuropathogenic effects. The activating factor(s) in the process resulting in protein or virion production may be members of the Herpesviridae. Several herpes viruses, such as HSV-1, VZV, EBV and HHV-6, have been associated with MS pathogenesis, and retroviruses and herpes viruses have complex interactions. The current understanding of HERVs, and specifically the investigations of HERV activation and expression in MS are the major subjects of this review, which also proposes to synergise the herpes and HERV findings, and presents several possible pathogenic mechanisms for HERVs in MS.

Or antiretrovirals, reverse transcriptase and integrase inhibitors, might be inhibiting retroposons:

What makes jumping genes jump? Demethylation.

Reverse transcriptase inhibitors presumably inhibit other viruses besides retroviruses if reverses transcription is required in the replicative process. Viread is used to treat chronic hepatitis B, for example. Hepatitis B is a DNA virus that replicates through an RNA intermediate and uses reverse transcription.

Telomerase is a reverse transcriptase. Therefore, arguably RTI’s might cause faster aging, but might tip the balance away from developing cancer. The more you think about it all, the more you realize that, like all drugs, antiretrovirals are blunt swords with many possible mechanisms of effect, all of which says that clinical trials are in order. One would think that the manufacturers would be interested in new indications for their drugs.

My own illness could be explained by a post polio syndrome caused by an attenuated virus, but it doesn’t fit my daughter. Does an enterovirus explain the vertical transmission seen in our families or a response to  antiretrovirals? Does anyone reading know the answer to those questions? Many of us remember the sugar cube that held the first oral polio vaccine. Polio virus can persist: Transmissibility and persistence of oral polio vaccine viruses: implications for the global poliomyelitis eradication initiative.

Protein from helper viruses and recombination events can rescue defective virus. Innumerable chances have occurred: Science Fiction or Fact? 35 years ago, when I was in medical school, autism and MS were rare. Autoimmunity has skyrocketed beyond belief, as has cancer.

Here’s an unsettling paper. Chemical Induction of Endogenous Retrovirus Particles from the Vero Cell Line of African Green Monkeys. Vero cells are present in the DTaP-Hep B-IPV, Poliovirus inactivated and Rotavirus vaccines. AzaC, one of the chemicals used in this paper is a demethylator. Other methods used in the lab to activate ERV’s and amplify retroviruses in tissue culture are radiation and steroid hormones, bringing to mind the myriad ways in which our environment is contaminated, contributing to the cluster fuck for the genetically susceptible and overexposed. Let’s wrap up today with this article which I haven’t finished yet, but it looks to be well researched: What Is Coming Through That Needle? The Problem of Pathogenic Vaccine Contamination.

 Today’s song: Burn One Down