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

Healing In A Toxic World

My health has been slowly improving for four and a half years. Even so, I have been unable to exercise without payback, but that changed three months ago. I attribute this breakthrough to “minding my mitochondria” per Dr. Terry Wahls. Six months ago I watched her TED Talk. I had written a blog entitled MS Light? a few months earlier, suggesting that MS and ME are two branches of the same tree and I thought, if it worked for her, maybe it will work for me.

We jumped into the diet as a family in July. In a nutshell, 3 cups each of greens, sulfur containing foods and colored fruits & veggies each day, bone broth, grass fed grass finished meat,  organ meat and seaweed. No grains or simple sugars. Olive oil, coconut oil, butter, animal fat. Every bite needs to be nutritionally dense. In addition, we cleaned up our act, went all organic, non-GMO, almost all locally sourced food, no cans containing BPA, no teflon or plastic in the kitchen. In addition, we emphasized a variety of mushrooms, ginger, turmeric, garlic, cilantro and fermented foods. We all noticed some improvement after a month, sick and healthy people alike.

Then I got distracted, sucked up in a negative energy vortex involving my family of origin, the kind of stuff that makes me nuts, and then sick. I didn’t particularly notice what I was eating for a while, but ate what my daughter, Julie, put in front of me. Historically, I can adhere to a regimen for about a month, before losing track, but Julie kept me on the diet.

One day, after about three months of eating this way, I was feeling particularly stressed, sick and discouraged. My husband said, “Let’s go for a ride on the tandem.” I quipped, “OK, maybe I’ll die.” I’ve ridden a few times before in the last few years, and the aftermath wasn’t pretty. But this time, it was only good- the ride itself, afterwards and the next day. I was shocked. After nine years, I didn’t really expect it to ever change. We went again the day after and have kept on going, trying to ride at least three times a week. We started with 4.5 miles in 25 minutes and have worked up to 17 miles in an hour and a quarter. Also, I can now hike a couple of miles again, even though walking was really tough before. When I stand, I don’t feel like somebody turned up the gravity anymore. My arms no longer feel heavy. No more wheel chairs through airports for this girl.

I am putting on muscle quickly. I have much less resistance to exercising than when I was younger and healthy. Maybe it’s because I couldn’t do it for so long or maybe it’s because exercise requires a willingness to suffer and my illness has taught me how to accept physical suffering. I am so motivated, we have continued to ride in freezing weather. We even tried off road for the first time a couple of days ago when it was 30 degrees out. 7 miles of dirt with mud and ice here and there, plus a fierce wind. Pretty hardcore for a 60 year old sick woman;).

We have been learning about food and improving our family’s diet since our kids were little, but even so, I must have been nutritionally deficient and/or being harmed from ongoing toxin exposure in my food to have experienced such a fundamental improvement in physical function. Here’s an interesting one. I have been taking Deplin 7.5 mg for years but in the last month, I’ve stopped tolerating more than a tiny dose, which is good, because the pharmaceutical preparation contains coating and additives that a quality OTC supplement doesn’t. So methylation status is much more complex than MTHFR genetics. It is possible to get enough folate from food, even for someone who needed to take it before in high dose pill form.

As I am using food as medicine, I am ever more suspicious of anything that looks like a pill or was made in a plant. I am taking Vitamin D3, methyl B-12 and OTC 5-MTHF in the form of Metafolin, B-complex, fish oil, UBQH, magnesium and chlorella. I am still taking antihypertensives and bioidentical HRT. I stopped Viread and Isentress a couple of months ago, once I knew my improvement was solid. A year ago, I had a hypertensive crisis when I stopped Viread monotherapy and restarted. This time my BP only went up a little for a short time and returned to better than prior baseline. I wanted to get off, because it is not going to be studied and there is no way to monitor what the drugs are doing. I was pretty sure they were helping in the first year, and we had clear laboratory evidence of improvement from the WPI, but after that, it was less clear. Both Ali and I did very well during the years we took them, but when we started, I thought we’d have viral load measures in a year and it didn’t happen.

Ali likes the diet, but hasn’t experienced the clear cut benefit that I have. She has continued her slow uphill climb, excelling in college at U Mass Lowell online, going out and being much more physically active, MCS improved, but still experiencing post exertional malaise if she pushes it. As she says, she has gotten very good at managing her spoons. She is living with her boyfriend in Albuquerque, something I wouldn’t have thought possible a couple of years ago. She has made huge progress, but it has not been clearly related to the diet. She wants to continue nevertheless. She stopped Actos about 6 months ago, continuing on metformin and luteal phase Prometrium with good control of PCOS symptoms. She came off arv’s in the last month and has been having a bit of a hard time since, but not so bad as to force her to restart at this point. With no support from the medical or scientific communities, it is time for us to stop if possible.

All of this is triggering my survivor’s guilt or whatever it is. Maybe that’s why it’s been so hard to write lately. Or maybe it’s just that my anger has been diluted by endorphins and anger has been the driving force behind many of the blogs I have written. I feel guilty reporting that this is what is working for me, because I couldn’t do it without lots of support. My daughter keeps me on the diet and exercise is dependent upon my husband’s skill and encouragement. My advice is find a friend to support you and, if you can exercise, pick an activity you have done before. I have muscle memory for the tandem; we rode for many years before I got too sick to do it.

Besides patients with neuroimmune disorders there is growing anecdotal evidence that a paleo diet is beneficial for patients with autoimmune disorders, in particular rheumatoid arthritis. Many ME patients have evidence of autoimmunity. Phoenix Helix is a good blog with lots of useful information, in particular how to do a strict elimination diet, cutting out the most allergenic foods that might be contributing to the problem, dairy, eggs, nuts, nightshades, legumes, and then adding them back in one at a time. Ali is planning to do this when she has a clear space to see if a particular food is keeping her from realizing gains.

So, since I was already on a good diet, what’s my guess for what is making the difference? The big changes for me were force feeding leaves, bone broth, seaweed, no grains, sugar or vegetable oils besides olive and a little sesame, almond and avocado oil. All organic. Toxin avoidance. Organ meats are a bit of a stumbling block for me, but I am eating some liver.

I am a small woman and can only eat 6 or 7 cups of vegetables and fruit per day. It falls off quickly if I don’t focus on getting in my cups. Once I eat what I’m supposed to there is no room for anything else. I have not been scientific about it at all. 3 cups is a heaping dinner plate, raw, where you can’t see the bottom. I just work on getting down as much as I can. I have a daily smoothie with leaves, berries and probiotics which helps me get down more greens.

A couple of my patients crashed themselves at the beginning trying to do the diet. Others have said up front, I can’t do it. I could never have done it without Julie. I think I could do it now, but I’m six months in and my daughter is now an inspired paleo cook, so if I stay home, I’m covered:). But I keep thinking about how to make it possible for sick patients. In a perfect world, share a cook. Otherwise, baby steps! Massive dietary change is hard on the body. Eat more leaves. Eat from the rainbow. Make bone broth once you have sourced clean animal marrow or knuckle bones. Put in some lemon or apple cider vinegar to help extract the minerals. It is kind of gross if you cook it on the stove top for a long time, but Julie makes it in a pressure cooker, which as far as I can tell, preserves the nutrients well. It is quick and wonderful. Healing. She makes it with garlic, ginger, fresh turmeric root and seaweed, then uses it to cook everything. I enjoy it plain or with spinach or kale.

There is so much to learn about food. Eating for health is a lifestyle, not a diet. Take a look at Eating On The Wild Side. It will inform your decisions about what to buy in the supermarket, farmer’s market and seed catalog, as well as how to store and prepare your food to maximize it’s nutritional value. It isn’t really possible to eat an ancestral diet since the foods that paleo people ate are no longer readily available. I really looking forward to gardening and foraging in the spring. My daughters and I started a Facebook community page called Healing In A Toxic World. Please join us. We are sharing what we are learning including how to source your food and lots of recipes.


Van Morrison – Days Like This