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.