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

Opting Out

My thoughts keep coming back to this paragraph on the CFS Patient Advocate blog:

Mady Horning gave a fine talk, echoing the one she gave in Florida in January. That talk can be accessed here. She spoke of the terrain and genetic defects leading to ME/CFS – what variables contribute to getting ME/CFS. In a follow-up question she was asked what we all want to know. What information can she give about the ongoing CFI Lipkin study? She said that 80% of the blood work is done, but that much additional work needs to be done on saliva, feces and urine. She said that they had identified several promising pathogen “candidates” including a “novel pathogen” – but the work was still early and no conclusions can be drawn. I have heard the term “novel pathogen” somewhere before.

A novel pathogen from Dr. Lipkin’s lab… Hard not to speculate on what it could be. An attenuated poliovirus perhaps? That would put us back into the doomsday scenario, life imitating science fiction again. My illness is consistent with a post-polio syndrome. I received the very first round of the oral polio vaccine from my pediatrician father. I have a vivid memory of lining up with the kids in his practice to get my sugar cube. I remember impressive pain from IBS for some time after that. My father told me it was normal, but I wonder if he wondered. He knew the state of the technology. My father’s office was attached to our house. He had rats in the toolshed on which he did research.  I also remember getting called into his office to get a gamma globulin shot followed by a kiss from a patient with measles, so I would get a “modified” case. He was on the frontier. Rockefeller Institute was nearby.  Lots of women exactly my age (59) are sick. Too high a percentage of the patient group. It was a wave. Something went out horizontally. There were other waves, the first outbreak of Epidemic Neuromyasthenia at LA County Hospital happened two years after the Yellow Fever vaccine was released, a live attenuated vaccine passaged through mouse brains, mouse brains that express viruses like XMRV. Maybe it’s a persistent enterovirus, as Dr. Chia has long thought. Maybe it lies dormant, and with an appropriate trigger, say organophosphate exposure, mold, infection, trauma, vaccination, what have you, it fires up and activates HERV’s, probably different sequences in different people and families. Doesn’t fit as well as the retroviral hypothesis, but it could be right.

Yes, I find myself hoping against hope that “the world’s most celebrated virus hunter” will find our pathogen(s). We need new treatment strategies. We are becoming visible as a patient group and there is more acceptance that there is a biological basis for our illness. ME patients are demanding the big guns. We are going to get what other patient groups get, to be guinea pigs. This is what can happen: PML Case Seen in Patient on Gilenya. This was an MS patient. PML or progressive multifocal leukoencephalopathy is a complication of drugs like Rituxan, trials currently being sought by ME advocate groups. That’s what modern medicine has to offer you, if you have a real disease.

Not to mention how monoclonal antibodies are produced… Hybridoma technology involves producing cells that are a fusion of another mammal’s B cells and human cancer cells and the resultant product is introduced into humans. Revolting when you think about it. Probably just the sort of thing that got us into this mess. Splicing and dicing viruses and growing them in the cells of various animals. That’s where XMRV came from. How many more? Here’s another scary one: from Modelling the long-term persistence of neutralizing antibody in adults after one dose of live attenuated Japanese encephalitis chimeric virus vaccine, which says, “One such new vaccine is a Japanese encephalitis chimeric virus vaccine (JE-CV; Imojev™; sanofi-pasteur), a live, attenuated product grown in Vero cells.” Vero cells are monkey kidney cells. So viruses spliced together in the lab and grown in monkey cells, which can express viral particles, are injected live into people. “Attenuated”, meaning reduced virulence, which doesn’t tell us anything about whether a virus persists or not. They look for persistence of antibodies, but not for persistence of the live virus they intentionally infect people with. Look how much they knew about the dangers of using monkey cells in 1960: Notes on viruses likely to be encountered in vaccine production using monkey kidney tissue. The government acknowledges that 30 million people were accidentally innoculated with a monkey virus, SV40. Not so surprising given the crude techniques they used at the time. It Only Took 50 Years: CDC Admits Polio Vaccine Tainted with Cancer Causing Virus.

It is out of control. Biotechnology run amok. We don’t have the wisdom, individually or collectively. It is all built on a faulty premise, that Big Pharma is going to save us. It isn’t going to happen. These are the folks that brought us Viox, Avandia and Fen-Phen. Fraud is rampant in the pharmaceutial industry. Huge multibillion dollar settlements happen all the time. Our world is becoming populated with sick people. In the US, 55% of children have a medical condition, 20% of the population have a rheumatologic disorder, 2% of children fall on the autistic spectrum. 1% of the US population has ME/CFS. MS, cancer, neurodegenerative diseases. The disease burden is enormous and completely out of balance with nature. It is no doubt multifactorial, but the parenteral use of engineered biologicals must be high on the list of stupid things we have done. All of this interspecies tinkering and regular introductions of foreign DNA and RNA into people who are chronically inflamed from their environments anyway, has offered innumerable opportunities for the creation of new infectious viruses. It is ridiculous to think that the creation of XMRV was a unique event.

The older I get, the clearer I am that pharmaceuticals are a very poor answer to chronic illness. All drugs are poisons, which doesn’t mean that you might not choose to take one, but they are almost never truly health enhancing. In particular, drugs which are akin to shooting a bazooka at the immune system are a bad idea. I know, I know, I am taking antiretrovirals. However, I have every reason to believe they are not going to kill me. I do not know if they are helping or not, but I tried to stop them and got worse. I had a prolonged hypertensive crisis when I came off Viread, requiring the addition of more drugs, now getting back to my baseline after on again for 6 months. Thus, I think I am better back on Viread and Isentress, but how can I know for sure? The disease waxes and wanes all on its own and life happens, making it very difficult to evaluate the effect of any one intervention. Antiretrovirals are not the only thing Ali and I do for our illness. We use oxygen and methylation supplements. We are always working on our diet and supplements. We get ever cleaner about food and the products we buy. Life does not imitate science in any way. Real life is always multifactorial.

At any rate, almost 3 1/2 years in, despite huge stress in the last 2 years, Ali and I are still beating the odds. We are not well by any stretch, but it’s a good life. Still improving glacially, not all the time, but overall, better function. Able to do more with less payback. Minimal suffering compared to our years as chronic Lyme patients. I have never said that anyone should take antiretrovirals, but it is still unfathomable to me that it has not been studied at all. Enough people experienced initial improvement, though it was rarely dramatic, and often didn’t last beyond a year, but it is a clue. These drugs are supposed to have specific activity and weren’t designed for what we have and yet, they can have a positive effect. There has still been no experience at all with protease inhibitors, except as reported to us by Dr. Snyderman. I don’t understand what it is about this particular class of drugs that freaks everybody out so much. Patients get  much more dangerous drugs for much flimsier reasons every day. Why? What’s the big deal about a trial of drugs which inhibit retroviral proteins, especially since they might have an impact on activated HERVs or other retroelements. I don’t understand why the drug companies aren’t more interested. There are more of us than AIDS patients. Throw in ASD and MS, we are talking about a lot of people.

My first day of medical school, in 1975, a wise professor told us, “Half of everything you learn here will turn out to be wrong.” Well, it was much more than half. Just recently there have been papers reporting Zithromax can cause sudden death. Statins and beta blockers are bad for old people. All those CYA  head CT’s we did on little kids that we knew would be normal gave some of them brain cancer. Mammograms are bad for you. When it came to nutrition, they didn’t teach us much of anything, but what we did learn was wrong. Turns out diabetics don’t need to limit fruit, only refined carbohydrates. Vegetable oils are mostly bad for you. Salt, coffee, bacon and eggs are good for you, if properly sourced. “They” were wrong about almost everything. What is bad for you is to eat processed foods that contain genetically engineered plants that tolerate RoundUp, but have almost no nutritional value.

What is bad for you is to take drugs for symptomatic relief of chronic symptoms. Sleep and pain meds are a trap. They commit patients to a kind of purgatory. They cause poor quality sleep, depression and cognitive decline. Deadeners. They lead to physical dependence and tolerance is an ongoing struggle. I am not judging anyone. I did it. I call them my lost years. Everything improved when I discontinued antibiotics and medication for symptom relief. I wish the drugs really helped, but they don’t, and they make it worse over time. Don’t kill the messenger. I prescribe them if I have to, but my patients know going in that my agenda is to wean them if at all possible. When patients give up unnecessary drugs, they come out improved on the other end, pretty much without fail, because the body works better without the toxic assault. I know up close and personal what it is like to sit there on pain meds, not tolerating the pain, wondering how it is possible to survive without dulling it, but the brain has been sensitized to the pain and in fact, can’t adjust to the reality of the pain while the drug is there.

Sleep is such a fragile thing. There is no way to reach deep restorative sleep through artificial means. Insomnia is perhaps the hardest symptom to address, inflammatory in nature. Insomnia goes hand in hand with better or worse, in a chicken or egg fashion. Melatonin and herbal concoctions can help. Neurofeedback may help, though sleep disruption is a stubborn symptom. Sleep hygiene is crucial. Sleep returns with wellerness. It is important not to go more than one night with no sleep, but sometimes some sleeplessness may have to be endured to get the body used to not being knocked out with drugs. There is a payoff at the end of that tunnel. Please note, it is dangerous to stop benzodiazepines without weaning.

Our family is trying hard not to comply with Big Ag’s agenda. We are a big family. Four generations under one roof, and I am blessed to be living with young adults who share the work. Ali and I are following the Wahls Paleo Diet, the rest of the family also, plus some rice, potatoes and gluten free bread. We both really like it, though Ali just discontinued Actos, after a slow wean. It was kind of tough every time she went down, so she hasn’t realized a tangible benefit from the diet yet the way that I have. She was already on the best diet of all of us. She plans and prepares many of our meals, for up to 9 people, a clear sign of how far she has come. I’ve been much less symptomatic since I started the diet. I was away for 5 days of wilderness camping with my husband for our 25th anniversary, didn’t have my daily smoothie or as many veggies as at home, cheated with a little gluten free bread, and my gut noticed. Now home again for 4 days, I again realize how important this diet is for me. What surprises me is, our diet was already really good. The differences are a huge increase in fruits and vegetables, no grains (we had already eliminated gluten), grass fed/grass finished animals, more fish, seaweed, marrow bone soup, nut milks, no cheese (we were already non-dairy except cheese), all organic, completely non-GMO (we were mostly there already). We are also emphasizing fermented foods, including brewing our own kombucha. Today’s smoothie was spinach, kale, purslane, frozen berries, hemp seeds, coconut milk, glutamine and water in the Blendtec. I used to be anorexic until noon. If I drink a veggie berry smoothie in the morning, my appetite is improved for the whole day and I can eat lots of green things.

Please read the comment by Celia Harrison in the last blog. There are other testimonials on the internet by ME patients who are finding this diet beneficial. It is likely useful for all neurodegenerative diseases. I heard from people who took exception with my use of the nickname MS Light in previous blogs, feeling that it trivializes our illness. That was certainly not my intent, rather I think the comparison of ME to MS is a useful one conceptually, but sister illnesses is a better way to put it.

It is more than a diet for us. It is a complete lifestyle. We are buying our food from local sources. No convenience foods. We are gardening and planning to expand next year. CSAs (community supported agriculture) are a wonderful way to go. Organic produce, in season. Instead of shopping for what you want, eat what you get. Big Ag considers the food we are eating specialty crops, because they don’t generate big profits. They don’t get made into GM corn syrup, which is what they make their money on. They have been feeding us their insane ideas, e.g. food containing BT toxin. Our illness is part of a bigger problem. The bees are dying. They are canaries in the coalmine, just like we are. The ways in which food is being mass produced in the modern world is making our planet sick also. What a strange world that growing your own vegetables and supporting local farmers is revolutionary.

Opt Out


Today’s song: As Time Goes By

Status Post XMRV

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: 

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.


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

Back To Basics

I have always found this to be a trying time of year, even before I got sick. Our family is one of blended traditions and we often wind up celebrating both Chanukah and Christmas, making the whole ordeal go on and on (bah humbug:-). My husband and I thought we had fulfilled our obligations on that front, but now we have little kids at home again. Our eldest daughter Julie, who is half native American, moved back home last year with her two children who are Pomo Indians, and our son is home from his first semester at Tulane. Talk about a mish mosh!

I am having one of those days where even my arms feel heavy. Hey, who turned up the gravity? I feel tremulous, but it doesn’t show. I would like to go to a Christmas party tonight, but I’m not sure at the moment if I’m up for it or not. I’m replaying my whole tape loop about not wanting to disappoint. It doesn’t mean I won’t feel good to go when the time comes, but it’s up in the air at this moment. I’ll use my oxygen, take an epsom salt bath, and probably get the boost I need. More bothersome than the weakness though, with which I’m accustomed to struggling, is the emotional reactivity that comes with more inflammation. I’m sure many of you can relate…

That particular symptom was one of my first. It started just a few months after the birth of my second baby at 40, and it made me feel like I was becoming a different person. For those of you that don’t know me, I had gradual onset of symptoms, no PEM and no diagnosis for a decade, followed by incorrect diagnoses. I haven’t been bothered by this particular symptom for quite a long time and reexperiencing it is sending me back to the exploration of biofeedback that began when I first became ill in 1995 and was looking for a non-pharmaceutical solution for this and other alarming symptoms. In addition to neurofeedback with Cygnet, which I use in practice, I’m enjoying trying out some of the innovations for biofeedback hometrainers and stim devices on the market now. Advancements in electronics have made for easier to use, more effective and less expensive devices. I am particularly interested in them, because most of my patients can’t access a neurfeedback therapist and I had some devices way back when that might be helpful in this context. I’ll report on this subject at some point in the near future.

The FDA committee’s rejection of Ampligen filled me with mixed emotions. As it has been clear for a long time that only a minority of patients do well on it, and as it has some significant downsides, I’m happy for the would be non-responders who will be spared yet another therapeutic failure. On the other hand, other patient groups with real diseases are allowed to try toxic treatments that have only a small chance of success. I am of course concerned about the people who need the drug being able to get it, but the tragedy for all of us is Hemispherx’s failure to figure out who to treat with their drug; thus they have contributed nothing to our understanding of the pathogensis of our disease. They have also sent a loud and clear message to other would be drug developers to avoid CFS like the plague: SHAREHOLDER ALERT: Pomerantz Law Firm Has Filed a Class Action Against Hemispherx Biopharma, Inc., and Certain Officers

The same problem with patient selection is now happening again with the early experimentation with Rituxan: patient selection is random and there are no markers to follow. If you are sick enough, want it and can pay for it, you can be a guinea pig. I predict the stats won’t be good, for the same reason that the Ampligen results weren’t. There may well be a subset of patients that would have a higher hit rate, but nobody knows which ones. For me, it’s even simpler than that. I don’t want anything to do with it, personally or professionally, if it can kill. ME/CFS is a relapsing remitting illness. MS light. The best place to start is with the safest things, try to encourage remission, which requires synergy of global strategies.

One day soon, coming to a Quest or LabCorp near you, we will have a whole genome sequencing test that insurance will pay for. Then we will finally learn something that might change our options. But until then?

Still trying to understand why oxygen works so well clinically, in the setting of patients with increased oxidative stress, I’ve been reading about “mitohormesis”. Please take a look at these papers. This is a very important concept. Oxygen has been used to good advantage in the autism community and I still believe that the diseases are related, the differences in disease expression being due to the developmental stage at onset of illness. These papers describe the mechanism by which repeated doses of increased reactive oxygen species produce cellular resistance to stress. So repeated doses of hyperoxia in patients unable to exercise might produce better mitochondrial function over time, a theoretical framework for a clinically observed phenomenon.

Since I returned to practice, I’ve been intending to turn my attention to supplement recommendations for my patients. To date, I haven’t had a protocol and my advice has been random and half-baked. The passing of Rich Van Konynenberg left a great hole in our community. I feel a great personal sense of loss, because he and I intended to share with each other and it didn’t happen, completely due to my limitations, all my small supply of energy going to my practice. Now that I am studying the subject in depth and coming across his lectures and posts on the internet, I am very upset with myself. He was a brilliant, giving man. Generous of spirit. I am learning a great deal from him now, since he shared his ideas so freely.

As my second year back in the world comes to a close, my most powerful interventions remain high dose pulsed normobaric oxygen, Deplin, B-12, organic SCD diet, hormone balancing, stopping meds if possible, eliminating environmental toxins and biofeedback. I don’t think such a program will cure anyone, but I believe it can help a lot and is almost risk free. Three and a half years ago, when Ali and I discontinued Lyme treatment, I made deals with the universe that, if Ali got better, I’d be satisfied. Acceptance is my mantra. This recent dip of mine is challenging me to use that mantra, rather than dwell on my losses which only increases suffering.

Ali is spending Christmas eve with her wonderful beau, visiting with his family in Albuquerque, experiencing their traditions, planning to bring him back here in the morning for presents and brunch. She has finished 25 of 120 credits towards her degree at U Mass Lowell with a 4.0 average. I am so grateful that she is able to lead a full life – with disability, it is true, but a happy life nevertheless. Finishing this up, I realize I don’t have it in me to go to a party tonight, then walk in the cold for Santa Fe’s Christmas walk with the kids. I don’t want to hold them up or have them worrying about me. I prefer to save my energy for tomorrow. I’m a little sad that I’m not going, but my husband doesn’t seem disappointed, so it’s all good.  It is a glass half empty vs half full moment, sitting by the fire, thinking about friends that are also alone tonight, envisioning a wonderful new year for all of us, filled with peace, love and greater wellerness. Merry Christmas.

Tonight’s song: It Came Upon A Midnight Clear

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

Life’s A Long Song

It’s been a very strange and unusual three years. The Lipkin study was the closing of the door opened by the Science paper in October 2009. For me, the shift from thinking about neuroborreliosis to retroviral causation for ME/CFS led to clinical decisions that have resulted in great improvement for both Ali and me. We are not well, but we are both leading full and meaningful lives, within the confines of illness. Existing within the confines of illness means the same thing for us that it does for other people with disabilities who need accommodations. It does not mean trapped in endless suffering with no help in sight. Prior to the fall of 2009, Ali and I spent a few really grim years couch bound together, wondering if a quick merciful end wouldn’t be a good thing. Now we are working and going to school. We are even playing some. We need to do it “our way”, but it is happening.

My personal journey through the world of XMRV was littered with betrayal and abandonment, so in a sense, I’m glad that part of it is over. I’m left to practice medicine much as I did before, but with new insight. Three years of reading retrovirology has changed my view of many things, medical, scientific and political. I’m in Hawaii right now treating two young ME women. Much of what I’m doing is a refinement of what I did in my last practice a decade ago. My own emotional adjustment to the collapse of the science involves accepting that the tools I have now are all there is likely to be for a long time. There isn’t going to be a cure and it is a long way off before conventional medicine has anything better to offer than what’s listed on the Mayo Clinic site: sleep meds and antidepressants, which many of us don’t tolerate.  Not even pain meds or anxiolytics. Exercise and therapy, because we are so overly focused on our symptoms. Back on the trash heap.

So where’s the redemption in this story that makes it worth writing about? ME, or ME/CFS, or CFIDS (since I’m a lumper, not a splitter) is a relapsing, remitting illness. It can be coaxed into remission. Remission doesn’t mean normal or healthy. It means not suffering so much. It is a process of encouraging healing and discouraging inflammation, requiring a gentle, multi-pronged approach that relies on synergy, tinkering and luck. Find some maneuvering room, a key for the lock. It is possible to stop the downward spiral, tip the balance and start the slow climb out. Unfortunately, there is never a uniform response to a given therapy with this illness, so treatment can’t be formulaic. When recovery does start, it is slow and fragile. It must be nurtured and it takes years, that from personal experience, since I have only been back in practice for a little over a year. Although, I have heard of spontaneous recoveries many years in, most involve hard work and careful choices. One thing I know for sure. There was never a patient population less suited to medical heroics.

Meanwhile, I sit here in the weird position of being better and still apparently improving on Viread for 2 1/2 years. I was so bad 4 years ago, nobody expected me to do anything productive ever again. Ask my ex-Lyme doc. I had a sleep disorder to rival any of my readers and I know some of you have pretty spectacular sleep problems. I now sleep normally. Even normal dreaming has returned in the last 6 months or so. My gut is also functioning normally on a modified SCD diet, 6 years after emergency surgery for a small bowel obstruction and a Crohn’s diagnosis. My intractable peripheral neuropathy pain, which once required opiates, is now little more than background noise except at the worst moments. PEM is reduced, but still problematic. I can exercise a little, being careful not to overdo, because it feels good in the moment. I won’t list Ali’s symptoms, but she is similarly improved on Viread and Isentress. Her horizons are ever expanding, her illness less and less restrictive. Have we done other things at the same time? Yes. Will antiretrovirals for ME/CFS be studied at all? Not a chance. Our government just spent a couple of million dollars to ensure that ideas like mine stay marginalized.

Dr. Lipkin was quoted on the IMEA FaceBook page in response to questions about whether any “positives” were found, “The investigators reported results as positive or negative according to their own criteria. The only requirement was that once criteria were established results could not be changed through modifications in criteria. I know this is not the intention of those who continue to pose these questions; nonetheless, the impact of this continued challenge to work of the team is that some people in the scientific community who might contribute are becoming reluctant to work on CFS/ME.” Yet, at the press conference, he encouraged us to advocate for ourselves more effectively. So we need to ACT UP, but be nice about it. Any ideas? We are a group in desperate need of effective advocacy. It’s not only the middle aged going down. There is a tidal wave of young people. They are not as visible as their autistic cousins, but just as profoundly disabled. Who is going to care for them when their parents are gone? We need to start advocating for them effectively now.

Life’s A Long Song by Jethro Tull


In cancer science, many “discoveries” don’t hold up, by Sharon Begley, a disheartening story, published today. Without integrity, there can be no science. This is probably how we got sick in the first place, though in the early years, it was more likely scientists doing whatever popped into their heads willy nilly, like Victor Frankenstein, with no framework for evaluating the possible consequences. With statistics like the one presented in Ms. Begley’s report, it seems folly to expect “science” to save us now. The system is completely broken.

The same problem with integrity in reporting results extends to doctors. This problem is particularly rampant amongst LLMDs, who continue to make exorbitant amounts of money harming patients, extolling the virtues of “sophisticated” combinations of antibiotics for “seronegative Lyme”. Not that Lyme Disease isn’t real, but it can’t be eradicated in the way they are trying to do it. Problems with a generalized lack of scientific integrity aside, here is the first paper I’ve ever read that adds something to the clinical picture.

Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection by Embers et al.

They infected monkeys with Bb and found that treated or untreated, the monkeys demonstrated persistence of the organism and inflammatory changes. Therefore trying to eradicate Lyme with endless courses of antibiotics is not the most sensible course of action, acknowledging the exception of a small subset who do relatively well on old fashioned acne treatment. Antibiotics are a double edged sword at best, particularly in the setting of preexisting dysbiosis.

My hat is off to these researchers for their fine study, sensible discussion and clear attempt to give physicians in practice something to work with. A marker!

In some cases, patients who have been treated for Lyme disease experience persistent symptoms. The assertion that further antibiotic treatment is warranted in these cases is a matter of contention and considerable debate [33,34,35,36]. Our results indicate that disseminated spirochetes of two different B. burgdorferi strains can persist in the primate host following high dose, or long- lasting antibiotic therapy. In terms of disease, only objective signs of disease post-therapy may be measurable in an animal model. While we did not find gross signs of disease postmortem, in Experiment 1 we did identify heart sections with inflammatory infiltrates in three of the treated animals. In addition, several animals, both treated and untreated showed sections of heart and meninges that were positive by immunofluorescence for B. burgdorferi. At the molecular level, B. burgdorferi DNA would indicate the presence of organisms, live or dead. The detection of RNA, however, should indicate that those present are metabolically active and thus alive. In Experiment 1, spirochetal DNA and RNA were detected in the tissues of a few animals, independent of treatment. This may reflect a low spirochetal burden, lack of flaB transcription [37], and/or seclusion in untested tissues.

And this:

The most pressing question in terms of human disease is whether or not spirochetes remain pathogenic after antimicrobial therapy. Similarly, do spirochetes persist long-term, or are they eventually cleared by the host? Clearly, the phenotype of persistent organisms needs to be elucidated. These studies support the use of the C6 test for diagnosis and measurement post-treatment; however, the absolute quantification of antibody levels may be essential in determining treatment efficacy for PTLDS patients, as low levels (yet above baseline) may indicate presence of residual spirochetes or antigen. Finally, the use of variable and pulse-dosing regimens of antibiotics may improve efficacy [43] and this warrants testing in an appropriate model.

That pretty much says it all I think. My daughter and I were an inappropriate model for a doctor testing various pulse-dosing regimens by trial and error on sick people, instead of monkeys. Saving a few isn’t an excuse for worsening the tenuous condition of the others, while claiming cure of a huge percentage, with no data, especially since the “treatment” takes years to evaluate. Treatment worse than the disease. Russian roulette. From my email yesterday:

I  want to very much thank you for steering me away from ILADS doctors! As I said, I went ahead and did a trial of antibiotics to “provoke” Igenex testing, just to settle the question for myself, and I ended up with acute pancreatitis (I do not drink alcohol; it was the antibiotics), and then an immune fatigued body so sick I was hospitalized twice with pneumonia after catching a flu (my husband says he was worried I was near death — I had pneumonia for six weeks).

After all this (and what would have been thousands of dollars in testing if I weren’t billed at the Medicare rate by Igenex and if the testing hadn’t been covered for me  by insurance), my labs for Lyme AND coinfections were flat negative (except for band 41 and mycoplasma). The ILADS doctor nonetheless encouraged me, based on this, to travel to another specialist and get a port, so we could provoke and continue treatment with even stronger drugs — and said I mostly certainly had “seronegative lyme” no matter what because of my symptoms of ME and tourette’s syndrome. I am glad my insurance and Medicare covered most of this. I am also lucky to not have died or had permanent effects (other than a collection of snake oil). Your words of warning were what kept me from damaging my body and taking the seductive and expensive hope.

The 5000 year old mummified corpse recently unthawed and autopsied had Lyme Disease. Iceman Autopsy. Although he was old enough to be developing atherosclerosis, he died of trauma. He had significant health problems, but at least he wasn’t infected with something created in a lab. They’ve sequenced the entire genome of a person dead 5000 years, not that that doesn’t have value, but when are they going to get around to us?

And hot off the presses from MedScape:

March 29, 2012 — The prevalence of autism spectrum disorders (ASDs) has increased by 78% since 2002, a new report from the Centers for Disease Control and Prevention (CDC) shows. However, the exact reason for this increase is unclear.

Overall, the report’s data, derived from the Autism and Developmental Disabilities Monitoring (ADDM) surveillance network, show that in 2008, 1 in 88 children aged 8 years — 1 in 54 boys and 1 in 252 girls — had an ASD diagnosis by age 8, a significant jump from the current estimate of 1 in 110.

Their conclusion? It must be because of better diagnosis, reporting and access to services! Oh that’s a relief. We can all relax now. In the meantime, our little team continues to make slow progress, with no paid help to complete an IRB approved Family Study. I don’t think Dr. Snyderman and I ever thanked everyone publicly for taking the time and energy to participate in the Informal Family Study last year. We learned a lot. The problem was the extremely labor intensive data entry, incomplete data sets, and no controls, but it made it clear that there is much to be learned. We are working slowly to bring it to reality. We are all in different parts of the country, with different primary responsibilities, but we will get it done. Stay tuned.

Much aloha.

Today’s song: Sounds of Silence by Simon and Garfunkle

Link if embedded video is not streaming well:

The Sound of Silence – Madison Square Garden, NYC – 2009