Cactus Fruit

Last October, after three months on the Wahls paleo diet, I recovered my ability to benefit from exercise. I had been unable to exercise without payback for nine years, since starting treatment for tick borne diseases, a decade into my illness. That most intangible switch between can’t and can suddenly flipped back and aerobic exercise became possible again. No drugs involved. Just a clean, nutrient dense, low carbohydrate diet. Lots of healthy fat.

In February, the “flu” went through our house. I was down with it for about 6 weeks. Then I pushed through and went to Tucson to see patients in April. My upper respiratory tract symptoms came back on my second day home and a week later my husband got sick also. Then, in quick succession, I had a UTI, sinusitis and a salivary gland infection requiring back to back courses of antibiotics.

My mood crashed also. It’s really tough to be very active for a while and then find yourself back in the pit. When I was emerging from years of hell, I felt amazingly wonderful, even though I still had lots of symptoms. Conversely, after a period of very few symptoms, I had a lot of trouble coping with symptoms that would have been no big deal when I was sicker.

I don’t usually catch stuff. I’d been experimenting with higher doses of Vitamin D after reading some studies about using higher doses in MS patients for anti-inflammatory effect. In hindsight, the dose I was taking was probably too immunosuppressive for me, though it is cited as safe in several recent papers. When I went back to a lower dose, the infections stopped. I didn’t try this experiment on anyone but myself. If you do try higher doses of Vitamin D, follow levels and be careful. Upward target level creep is happening in the literature, as people try to use Vitamin D as a drug, not just a preventative. For me, 5000 iu daily seems OK and my 25(OH)D level on that dose is about 50 ng/mL. More was not better, but I am not saying that it couldn’t be for someone else. The word isn’t in yet as to how to supplement Vitamin D optimally in the setting of neuroimmune illnesses. Natural sunlight is no doubt the best way. The most powerful ways to heal are provided by Mother Nature, not a pharmaceutical or neutraceutical company.

Despite my fear that the gig was up for good this time, gut torn up again by antibiotics, I started the climb back to wellerness. I was really weak when I got back on the bike, but I improved faster than the first time and by early August had surpassed my previous level. Anthony and I spent our 26th anniversary camping on the Conejos River in southern Colorado, and went fishing in our canoe on Platoro Reservoir, same as our 25th. Last year, I needed a special seat on the floor of the canoe with a backrest. This year, I could help paddle. Last year, I couldn’t ride a bike. This year, we rode uphill on a fire road for an hour, from 9000 to almost 11,000 feet, before a long, exciting descent. Then later, the same day, we went fishing. If you have been reading my blog for a while, you will recall, I used to need a wheelchair to get through an airport. Now I could jog to the gate if I were late. Exercise is my go to “treatment” when I am feeling poorly, which I still do, not infrequently. I am not cured, by a long shot, but I’m not at the mercy of the illness. I can fight back.

I still attribute my recovered exercise ability to the Wahls paleo diet. I’m no longer completely adherent though. My intake of vegetables is much increased from prior, but I’m no longer force feeding. I eat some rice and quinoa and a few legumes. I eat bananas, apples and pears, though Wahls excludes them. I’ve learned that any dairy is problematic, except butter, but I can get away with a bite of gluten, at least as far as I can tell. Properly produced eggs are my friend, though I haven’t tested for egg allergy or tried eliminating them. My focus has become not only what I eat, but what I avoid, especially toxins and GMOs. We are paying attention to what cookware we use and what we store food in. Bone broth is a staple in our household. My daughter makes it with fresh turmeric root and seaweed. I love my green drinks. We are having an adventure with fermenting. We are learning what edibles grow naturally around us. I am going hunting for prickly pears with my daughter and grandchildren in a little while, planning to make prickly pear, crabapple butter. It will probably be terrible:-), but the walk and the project will do us good.

We are no longer eating as much meat as we were when we first went on the diet. We are a large family and bought a whole cow from a local ranch. It was definitely different to buy it alive and sign off on its slaughter. For about six months, we ate a large amount of very high quality, grass fed, grass finished beef. After that, two healthy members of the family had serious GI complications, specifics of which I won’t share to protect their privacy. Anecdotal of course, but we decided to back off on the red meat. We are eating more fish, even though finding clean fish is so problematic, and having more vegetarian meals.

I stopped writing, not because I was too sick, but because I was too negative. Existential crisis. Jaded and cynical. Disgusted with how broken and corrupt the system is and how hopeless it seems that our current suicidal trajectory can be changed in time. We are about to be a failed experiment, on a global scale. Why write about it? Time to eat, drink and be merry. We have the technology to figure out what we need to do, and not do for neuroimmune illnesses, but no cavalry is coming over the hill. The game is rigged. All greed and special interests. What gets studied, and then published, is tightly controlled. Obvious studies that challenge a prevailing paradigm will not get done (vaccinated vs unvaccinated children or the family study we tried to do once on this blog). Scientists who dare to depart from the mainstream paradigm are discredited (Mikovits and Ruscetti). Yet real live fraud within a government agency that most likely harmed children is covered up by the media (see my last blog). The billions of dollars paid out by the drug companies for their frequent gigantic frauds make the news, but their stock prices remain strong. Those billions are just the price of doing business. And they are indemnified in the case of vaccines, so that’s a real gravy train. The medical profession is completely asleep at the wheel when it comes to the causes of or solutions to complex chronic diseases. Safe treatments that can’t be patented, like home oxygen, will never be studied. So their treatments now do more harm than good. Conventional doctors push dangerous drugs. Alternative doctors push expensive tests and supplements. Depressed yet? I certainly am, if I think about it too much. So I won’t. I’ll go on a hike with family at the end of a magnificent monsoon season in the high desert, pick prickly pears and be grateful I can walk. Time to find some heavy gloves.

Stay tuned for an update from Dr. Michael Snyderman.

By Way of Sorrow –  Cry, Cry, Cry

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

Bats In The Belfry

I missed Dr. Lipkin’s dog and pony show a few days ago, but thank you to ME/CFS Forums for posting a transcript. Here again, it appears he has dismissed the only finding that actually adds to the discussion. It is just like last time when he dismissed the only positive finding in the XMRV study, that 6% of the people tested were positive for an antibody to a nasty mouse retrovirus, significance unknown. This time:

We found retroviruses in 85 percent of the samples. Again, it is very difficult at this point to know whether or not this is clinically significant, and given the previous experience with retroviruses in Chronic Fatigue I am going to be very clear in telling you, although I am reporting this at present in Prof. Montoya’s samples, neither he nor we have concluded that there is a relationship to disease. I’ll repeat that one more time. We found retroviral sequences, but their relationship, at this time, to Chronic Fatigue Syndrome is unclear and, in fact, if I were to place bets and speculate, I would say that they are not going to pan out.

In addition to this astonishingly unscientific statement, in the same week, he announced other recent findings. From the BBC News: “They found nearly 60 different types of viruses, most of which had never been seen before”, in one species of bat. He extrapolated this to suggest that there are 320,000 new viruses in mammals still to be discovered. However, he could find nothing at all in hundreds of sick humans. Presumably using the same techniques. Or is that the problem? Doesn’t it seem unlikely that there would be nothing to find in sick humans with low NK function and a propensity for opportunistic infections of all kinds? We are mammals after all. Here is the paper: A Strategy To Estimate Unknown Viral Diversity in Mammals. He wants to spend billions of dollars in an attempt to avert a pandemic, when he has several existing pandemics staring him in the face. I guess existing diseases aren’t as much fun as teaching Gwyneth Paltrow how to have a seizure. Then again, maybe we all really do need to be vaccinated for the next bat virus we might encounter.

But, he did give the nod that we are sick, not just crazy, so I guess that’s a good thing coming from such a high profile scientist. We have elevated levels of proinflammatory cytokines and chemokines. Completely nonspecific, all downstream effects, but abnormal numbers nevertheless, something measurable. In my experience however, the commercially available tests (Labcorp and ARUP via Quest) don’t show the abnormalities he describes (and which have been previously described by others), so we need more sensitive assays commercially. I’m not sure why the difficulty, but the clinical reality is that the doctors who are actually treating the patients have almost nothing to follow, except for a very few nonspecific inflammatory markers in some patients, e.g. hsCRP, C4a and TGF beta-1.

So that leaves us exactly nowhere, as usual. We are not going to be saved anytime soon by the medical model. Look how much the scientific method has accomplished for us in the last few years:-). As a doctor, I have a small bag of tricks to fight a terrible, incurable disease. However, it is an inherently unstable disease, relapsing and remitting all on its own. Look for a way to get a foot in the door. It is possible to tip the balance in favor of better health with global strategies that support the body, mind and spirit. Find synergy. Ali and I continue to be committed to the Wahls paleo diet. Less suffering for sure, after only a couple of months. Just like oxygen, methylation supplements, hormone balancing, we feel better from this intervention. Not expecting a cure, but we are both experiencing a bit more uphill movement, even though our diets were already pretty good. Please take a hard look at this diet, most likely beneficial for all neurodegenerative and inflammatory diseases.

Ali has all but moved out, her symptoms so manageable that she is mostly living with her boyfriend in Albuquerque, despite nearly new construction that once triggered her MCS so badly, she almost couldn’t be there. There was a time when I didn’t think she would ever be able to live away from me. Bittersweet…

She Blinded Me With Science (Live) by Thomas Dolby

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.

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Today’s song: As Time Goes By