RNase-L Enzyme Defect Disease (aka Chronic Fatigue Syndrome)

About a month or so ago, I realized that I didn’t know what the physical root of Chronic Fatigue Syndrome was. Is it the mitochondria in the cells that are being affected? Which organs does it emanate from? I tried looking it up on the internet, but found no answers. On Friday, my karma healer handed me an article written by her teacher on “RNase-L Enzyme Defect Disease, also called Myalgic Encephalitis, also called Chronic Fatigue Syndrome Immune Deficiency)! This paper contained some of the answers I was looking for! Little by little, I am acquiring pieces to the puzzle.
RNase-L is an enzyme that is normally 80 molecular weight. It is responsible for breaking up the damaged and infected cells in the TH1 immune system, in which the body sends out “scouts” or white blood cells to look for infected or broken cells in the body. “In RNase Enzyme Defect Disease, the RNase enzyme breaks apart for some unknown reason and the center part of the enzyme falls away and the two end pieces of the enzyme join back together forming a truncated 37 molecular weight ‘junk’ RNase enzyme. This junk RNase has many deleterious effects on the body. When the Rnase-L breaks, the TH1 immune system becomes ineffective, so the viruses re-surge.”
“The broken RNase-L KILLS the mitochondria, which are the energy factories of the cells. This causes a slowing of ALL cells in the body. The normal brain cell contains over 1000 mitochondria. When these cells die off, the cell ceases to work correctly, causing brain fog, sleeplessness, and cell death. In some cases, people develop symptoms of cognitive, memory, and reading comprehension problems. Severe cases have been known to develop seizures and other neurological symptoms… Some people claim to have only 15 percent of the physical stamina from before they got sick.”

“The ‘junk’ RNase-L literally junks up the system. The lymphatic system gets filled with leftover truncated junk RNase. The brain cells do not Meios or replicate after childhood. Because of this, they do not clean themselves very effectively and are particularly affected by the broken RNase-L. They are also the first to get channelopathy. This is a condition where the cell walls become plugged and the cellular metabolism fails. ALL other cells in the body are also affected.

The weakening of the first line of defense leaves the body open to other disease processes and maladies. Because the TH2 immune system becomes overactive when the antibody titers surge from the failed TH1 immune system, various auto-immune problems can arise as the TH2 immune system becomes over-revved.”

He says one way to keep the RNase-L from breaking into the ‘junk” version is to lower overall inflammation. Heavy exercise (especially cardio over 10 minutes) MUST be avoided, as it dramatically increases inflammation and requires RNase-L in large numbers to clean up the body of broken cells from the exercise. (I don’t know who would be able to do even a few seconds of cardio or heavy exercise with CFS!) Alcohol and sugar causes the RNAse to break into the defective version and must be avoided. Gluten should also be avoided. Lowering psychological and mental stress also helps to reduce inflammation.

There is only one place in the US that performs an RNase-L assay test (VIP Dx lab in Reno). “High levels of the broken RNase-L 37 molecular weight are very indicative that a person has this syndrome. Some statistical analysis says that 95% of people with the symptoms of CFS show the RNase-L protein marker.”

Prognosis

“There are some statistics that show only about 20% of people who get this condition partially recover and only about 4-5% completely recover. (!!) There is evidence of shortened life with many dying in their mid-fifties to mid-sixties through the development of secondary problems from the weakened immune system. The weakened immune system is also thought to cause co-infections and susceptibility to parasites and toxic chemicals. Research has pointed out that 5-10% of REDDS victims develop Non_Hodgkin’s Lymphoma. Many people get cancer from the weakened immune system.”

“It is a little like Alzheimer’s because of the brain fog and loss of some concentration and cognitive abilities It is a little like AIDS because it is an immune system failure. It is little like Rheumatoid arthritis because in some people, the broken RNase-L attackes the joints, causing great pain. It is a little like Multiple Sclerosis because it may cause nerve damage and even seizures in some individuals.”

A great wave of compassion swept over me as I read this article. I finally had an answer for what was happening inside of my body! And now, I have a way of explaining it to others. No one seems to have sympathy for a person who who is completely depleted or unable to recover from energy expenditure. I find people’s strong reaction to the word “cancer” so interesting. So many people that have been diagnosed with cancer are able to work full-time, exercise like they always have (even running marathons!), and have a fully functional life, when people who suffer from Chronic Fatigue Syndrome or Lyme Disease, or a host of other auto-immune diseases are confined to their beds or homes, unable to function at all, or have at best, a tiny sliver of their former capacities. No wonder I have no energy and no ability to recover! My mitochondria have been killed and EVERY cell in my body is being affected! And I am one of the luckier ones. There are many people with CFS who can not even stand up and have to be fed intravenously!

Here is a short video featuring one of these people (along with 2 other cases that aren’t as severe). It highlights the stigma of the disease, the lack of concern from doctors and society, the stripping away of one’s life, and the tremendous isolation this disease causes. I highly recommend watching this!

And here is great documentary about a woman’s search for answers after receiving no help for her own condition. She tracked down doctors and patients from the first outbreaks of this disease in the US. Unfortunately, not much has changed since this documentary came out in the late ’90s!

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Health Update/ Chronic Fatigue Syndrome

My good news is that I have made major improvements in my digestive system in the last five months- all by completely changing my diet and taking supplements! After nearly three years of daily diarrhea and crippling abdominal pain, this feels like quite a miracle, and I am very happy about it!
The not-so-good news is that my Chronic Fatigue Syndrome still holds a tight grip on me. I felt that I was starting to improve a bit in January, but slid right back in February and early March. I gave three talks in February, which is more than I have given in a month since I lost all of my energy in July. Unfortunately, my body still can not recover from exerting any energy. After each talk, I was nonfunctional the following day (only able to sleep or sit and do nothing while awake), and it took a good week to return to my baseline of sleeping 12/13 hours per day. Giving three talks meant that I was in a constant cycle of trying to recover from the previous one. When my body is trying to recover, my brain also shuts down and I am not able to write or do anything more than read a little bit. This is why I have not been able to update my blog in such a long time.

Because these were my last scheduled talks, I forced myself to send out over 60 e-mails to libraries and schools, reminding them that I am still offering my PCT talk and announcing my new talk entitled, “The Gifts of Chronic Illness: Turning Adversity into a Path of Awakening and Transformation.” To date, I have received only one response of interest for my new talk, which was quite surprising to me. I had hoped to reach broader audiences than ones interested in hiking. I have to trust that the universe is looking out for me, knowing that I need to put all of my focus into my recovery at this time.

On Wednesday, I went for a short walk for the first time in a long time. I thought I was doing something good for myself- getting out in some sunlight and fresh air, and moving my body and circulating my blood. I was thinking hopeful thoughts. But as soon as I returned to my apartment, my body quickly started shutting down. I had wanted to make a smoothie for myself, but suddenly had no energy to do so. I slept for 2 and a half hours and felt AWFUL for the rest of the night. I slept until 1:30pm the next day (a little more than my usual noon-1pm). All because I attempted to move a little bit! It felt scary and very disheartening to become SO depleted after a short, flat walk. I wonder if I will ever be able to hike again. And I wonder how I will ever be able to support myself.

Having Chronic Fatigue Syndrome is like living in the red zone of the battery on your phone. When the power in your phone drops to this place, it warns you that your battery is low and asks you if you want to continue. If you have Chronic Fatigue Syndrome and do decide to continue and expend some energy, you become completely depleted without the ability to recharge. Completely resting for a week might bring you back to 10-15% of your power, and then you choose again whether to stay at that place, or do something and drop to zero again… Your body never moves past the “red” zone.

This video on singer Avril Lavigne’s experience with Lyme Disease shows her visceral remembrance of those months when she experienced the complete shut-down of her body to the point where she could not walk or talk, as well as how it feels to be told that you are “depressed” by your doctors- all of which I have experienced and felt, as well. It is very frightening to not know what is happening to your body, to suddenly become bedridden, and to be dismissed by doctors.

These chronic autoimmune illnesses have NOTHING to do with lack of motivation, laziness, or depression! They are completely physical. Avril is very lucky that she has a large fan-base to show her support. I have felt the very opposite!

Whenever I get down about my lack of progress, I have to keep reminding myself that I have not heard of a SINGLE person who improved in less than 1-2 years. I have heard of MANY cases who took several years to even start improving, and when they did, it was a gradual process.
One of these people is a karma healer who I just started seeing. She suffered from Lyme Disease, as well as Chronic Fatigue Syndrome, herself. For three years, she was unable to work at all and was unable to care for her son. She started to get better by taking certain herbs and by receiving the kind of work that she now helps others with. She communicates with her clients’ guides, identifies their archetypes (accumulated from this lifetime as well as past lives), and then clears them. In my first session, she compiled a list of nearly two pages of archetypes for me and said that she would be exhausted if she were carrying all of that, as well! I have done a lot of work on my own (changing my diet, taking supplements, informing myself about autoimmune diseases, doing the daily workbook exercises in “A Course in Miracles”, listening to Marianne Williamson’s weekly lectures, meditating an average of 20 minutes a day, doing some gentle yoga when I feel up to it, and keeping up my gratitude journal). However, there are a lot of things an individual can not do on their own. We all need a support system and people to help us. I know that although my gut issues opened the door for Chronic Fatigue Syndrome to be expressed, that this disease is heavily rooted in my childhood and in a lifetime of not being seen, and of enduring trial after trial with no breaks. My life has had very few joyful moments. Most of them have occurred on my long hikes, but this past one was tied with extreme illness and pain, which led to more and more of that until my body completely stopped functioning. This work helps to clear a lot of these burdens and pain. It is fascinating for me to sit back and be completely quiet while my guides tell her very accurately who I am, how I feel, what I have experienced in my life, and what my strengths and weaknesses are! None of us are alone. We might feel like it, but we all have unseen guides looking out for us and rooting us on!

I apologize for being unable to post for so long, and will do my best to write as I am able!

(For anyone interested, you can find me on Facebook, which I update much more frequently. Lately, I have been posting a lot of support for Bernie Sanders, who I feel very strongly about getting elected as President, as well as information on health-related topics.)

When You Know Better, You Do Better

In early December, I read a book that I would put into the ‘life-changing’ category. It is called, “Medical Medium” and was published just one month earlier. In it, Anthony Williams shares his story of being tapped by Spirit to diagnose the health issues of all who he would come into contact with, beginning with his grandmother. At the age of four, he heard a voice external to him that told him repeatedly to go to his grandmother, place his hand on her chest, and say the words “lung cancer.” At the time, she displayed no symptoms. His family was taken aback. But when she visited her doctor several weeks later, an x-ray revealed that she did indeed have lung cancer. Every day since, he has been visited by Spirit and by the age of eight, Spirit was always accompanying him. He learned that this particular form of Spirit represented the word Compassion (which precedes Faith, Hope, Joy, and Peace). Williams’ life was made very difficult by this constant voice and its diagnoses and he often wished to be free of this burden. He finally relinquished when Spirit saved both himself and his drowning dog one day as a young adult.
William specializes in diagnosing and understanding chronic “mystery” illnesses such as Adrenal Fatigue, Autism, Chronic Fatigue Syndrome, Depression, Fibromyalgia, Digestive disorders, Lyme Disease, Migraines, MS, PSTD, Thyroid disorders and more. Western Medicine will not have an understanding of these illnesses for another three or four decades. No one has that kind of time to wait. He writes, “As with any addiction, the first step is for the medical communities to admit they have a problem.”

Just as Dr. Jesse Stoff understood and wrote about in his book, “Chronic Fatigue Syndrome: The Hidden Epidemic”, published in 1990, William acknowledges that the Epstein Barr virus is the cause of Chronic Fatigue Syndrome, Fibromyalgia, and several other maladies including thyroid disease. (Many other researchers have also come to the same conclusion). Today, there are 60 varieties of this virus. The medical community is only aware of ONE version. While over 70% of Americans have this virus, only some become ill. [Dr. Nicholas Hedberg says that over 95% of the world’s population is infected with Epstein-Barr, most contracting it before the age of three. He also says that the first step in its progression to an autoimmune disorder is a genetic deficiency in CD8 T cells). In its earliest, most dormant, and most vulnerable stage (when it can’t be detected by antibody levels, causes no symptoms, and remains unknown), it floats in the bloodstream. It can remain in this stage for over a decade. At some point, the virus will look for a home in one or more of the organs. In this stage, the virus will still elude tests as it is not presently active in the bloodstream. Tests to detect its presence in organs have not yet been invented. Meanwhile, it is creating three types of poison: toxic waste matter, toxic corpses at the end of each cell’s 6 week life cycle (creating fatigue as the army grows), and neurotoxins that prevent the immune system from attacking it. These poisons affect the liver’s ability to flush out toxins and cause the intestinal tract to become toxic. The virus can remain in this stage for a very long period of time. When an extremely stressful event such as surgery, a car accident, or pregnancy occurs, putting the body in a very vulnerable state, the virus springs and makes a run to another organ, drilling into the tissue- commonly the thyroid gland. (5% of thyroid disease is caused by radiation while the other 95% is caused by Epstein Barr). The immune system then elicits a response, causing inflammation in the body, but can not completely destroy the virus. Rare, aggressive forms of EBV create cancer. When the thyroid is stressed, it places stress on the endocrine system. More adrenaline is generated from the adrenal glands, which EBV feeds on. Its next target becomes the central nervous system. Because Epstein Barr has existed for over 100 years, it has had many generations to mutate and evolve, creating more and more severe strains, which are affecting people at earlier and earlier ages. The medical community is only aware of one of these strains in Group 2 (a relatively mild one).
William also points out that the body does not attack itself! Viruses attack the body’s tissue.
He also discusses Lyme Disease and its true cause- viruses! Neither ticks, nor the bacteria they carry cause Lyme disease! In 0.5% of Lyme cases, a tick bite can be a trigger for Lyme, but it does not cause it! “Hundreds and thousands of people who have never been near a deer tick receive Lyme disease diagnoses.” The medical community, just as in many other instances, does not want to admit it made a mistake. Antibiotics given to Lyme patients create even more harm, as viruses love and feed off them! They also cause damage to the gut and immune system. A bull’s-eye rash (which can be caused by any type of insect bite) is a result of part of the creature being lodged under the skin, causing a normal skin infection. In these cases it is okay to use a mild antibiotic.
He writes about the causes of menopause and perimenopause symptoms in women (also due to viruses, radiation, and pollutants in the environment and in our food, and which are now occurring in women in their twenties and thirties), as well as numerous other ailments, including depression and PostTraumatic Stress Disorder. He says that Alzheimer’s Disease is caused by toxic levels of mercury in the brain and can be reversed by detoxifying the body of heavy metals. (ADHD and Autism are also caused by high levels of mercury and aluminum that settle in the brain’s midline cerebral canal). Mercury is able to be passed down through each successive generation.
He dedicates an entire chapter to discussing the current fear of fruit because of the sugar in it, which he thinks is preposterous. Fruit is the number one cancer fighting food. It also kills viruses. The sugar in fruit is very minimal and is not present in a form that can do harm to the body. He argues that high levels of fat and protein (especially in meat) is what actually causes and allows diabetes and other illnesses to persist by causing the liver to lose its store of glucose.
Some of the worst foods a person with a chronic illness can eat are corn, soy, canola oil, beet sugar, eggs, dairy, pork, farmed fish, and gluten. And one of the worst supplements to ingest is fish oil due to its toxic levels and form of mercury! This concentrated amount of mercury can easily cross the blood-brain barrier and enter sensitive organ systems. It also strengthens and feeds viruses and bacteria. (Ugh! So many things that we are told are “good” for us and that we need are actually toxic!!).

William says that while research will eventually catch up to the information he has listed about the above illnesses, the workings of gut health “may never be uncovered by medical communities on this earth”! (Possibly because we will destroy our planet before that time comes!). He says that Leaky Gut Syndrome is actually a very serious disease that causes severe blood infections and raging fevers. Most people who have been told they have leaky gut actually have ammonia permeability. If hydrochloric acid in the stomach becomes low, proteins that reach the lower intestine won’t be broken down and cells will not be able to access their nutrients. Instead, the food will just sit and rot, creating ammonia gas. This gas then drifts into the bloodstream and is carried throughout the body, resulting in fatigue, skin problems, anxiety, and other problems. Chronic stress is enough to create low levels of hydrochloric acid. So are antibiotics, immunosuppressants, overeating of protein (animal meat, nuts, seeds, and/or legumes) or foods that combine fat and sugar. William says that the first step in fixing ammonia permeability or in addressing any other gut health issue is to restore the stomach’s supply of hydrochloric acid and strengthen the digestive system. The most effective way to do this is to drink a glass of straight celery juice first thing in the morning on an empty stomach. (I have been doing this for several weeks now. I noticed that it immediately lowered the amount of stomach gurgling I was having). The second step in addressing gut health is to remove toxic heavy metals from the gut, which are prime food for viruses, bacteria, fungi, parasites, and worms. “When these pathogens consume the toxic heavy metals, they release a neurotoxic gas that attaches itself to the ammonia gas and travels through the intestinal lining.” They then inflame the gut, release their poisons, leading to disorders such as IBS, Crohn’s, and colitis. The third step is to restore the gut flora and maximize production of B12. Good bacteria produce most of the body’s supply of B12 in the final section of the small intestine (the ileum). It is this form of B12 that is most recognized by the brain. When the good bacteria in the body dies, the ileum becomes inflamed and severely weakens the immune system. It also ceases the production of B12. Medical labs can not detect the levels of B12 in the gut, organs, or central nervous system, which critically needs it. The best way to restore good bacteria to the gut is through elevated microorganisms that are found on above ground fruits and vegetables. They must be consumed directly picked and unwashed (something that is not possible in the winter in Boston!). Most of the microorganisms in fermented food and yogurt will die in the stomach and never reach the small intestine! (Kimchi and kefir are not so beneficial, after all!).

William lists the highest nutrient foods for healing each of the illnesses he discusses, as well as the supplements needed to attack the viruses. (He does not give dosages, however). He also gives case studies for many of the illnesses he discusses. Unfortunately, the healing times for chronic illnesses are still very long (but much shorter than if nothing was done at all!). A person with Chronic Fatigue Syndrome who follows these protocols will typically take a year to a year and a half to see major improvement. There is a lot of information in this book and I highly recommend it to anyone. It is a fast read, and as time progresses, more and more people will be needing to heed this advice in order to heal themselves!

Time for a New Year

2015 was a tough one for our planet and for many of its inhabitants. For me, it was no different. Four days into the new year, I was hit with the worst stomach bug of my life. This virus weakened me so much that my eye was infected and remained so for weeks. At the same time, I was dealing with chronic gut issues and a very painful torn meniscus. I had knee surgery the second week of February and worked very hard to regain flexibility and strength in that leg over the next couple of months. To the surprise of my surgeon and physical therapist, I was still feeling a sharp pain that was similar to the one I felt pre-surgery weeks later. By mid-April, when I returned to yoga, I was struck with a new (and very scary) problem. Two days after my period ended, I began to bleed heavily every day for the next 10 weeks. (The doctor made me wait 6 weeks before he would perform a simple 10 minute test). In May, while I waited, I started experiencing debilitating migraines for the first time in my life, frequent nausea for no reason (making it very hard to try to do yoga), abdominal pain, and loss of energy. By early July, my body completely ran out of energy. I felt like I was dying. I couldn’t stay awake for more than 5 hours per day. I didn’t have the energy to say hello to a clerk or person on the street. It took me 3 and a half days to collect enough energy to go out and get groceries, after which I immediately had to go back to bed. I didn’t know what was happening to me. But I knew I didn’t want to live that way. I was ready to die.
At the end of July, I had my second surgery of the year. I had a polyp removed and the insides of my uterus blasted with microwave radiation to burn and destroy the lining. I woke up crying and confused. Part of me had thought that if they gave me anesthesia, I wouldn’t wake up. My body was too tired.
I anticipated that my energy would gradually return in the following weeks, but it did not. One night, while looking up the typical recovery time for my procedure, I read a long list of complaints from women who wished they had never had it. Many suffered from painful abscesses from pooled blood that could now not escape. I began to regret my decision.
By the end of August, I figured out that I was suffering from Chronic Fatigue Syndrome. Luckily, after posting this finding on Facebook, a fellow long distance hiker wrote to me about her own experience of contracting this disease when she was 27. It was one of the best letters I had received in my life. It reaffirmed some of the things I had been learning myself. By this time, I had occasionally tried doing some yoga at home with the result of rendering myself bedridden for the next several days or week. My body had completely lost its ability to recover. I had lost the ability to access my strength in the only way I previously had been able to access it. A simple flat walk on the beach would send me straight back to bed. I had a few remaining talks scheduled, but didn’t know how I would manage to even drive over two hours to give them. At the same time, my brain was paralyzed with a fog that I had never experienced before. I couldn’t read or write. I couldn’t even reach out for help.
By the end of October, I knew that I had to drastically change my diet in order to even have a chance at healing. I had to give up coffee, sugar, all grains, all beans, all dairy, eggs, nuts, seeds, and nightshade vegetables. Two months into the diet, I was beginning to see some improvements in my digestive tract and brain fog, but I was disappointed with my lack of progress in regaining energy or my body’s ability to recover.
I have never been this sick for such a prolonged period of time. In many ways, having a chronic illness is similar to suffering from the flu every day consecutively for six months or years. It renders your body so weak that you are largely confined to bed. There was not one day this year (or in the last 2.7 years) where I felt healthy.
I also learned that very, very few people try to understand or sympathize with someone suffering from a chronic autoimmune illness, while they  become VERY responsive to those who have received a diagnosis of cancer. Cancer has been very well studied, funded, and publicized, whereas chronic “mystery” illnesses have not- even though more than 5 times the number of people have an autoimmune disease than have cancer and even though those who have been diagnosed with cancer are often able to live a much higher quality of life than someone with a chronic autoimmune disease.
I wondered throughout the year if I was experiencing the worst year of my life, but the truth is, I can’t remember when I haven’t had a very tough, challenging, and sorrow filled year. Some people’s lives are filled with an exorbitant amount of tragedy and strife. The playing field is most definitely not level. On the other hand, the human spirit is capable of tremendous resilience. I feel like this illness is giving me the opportunity to turn my life around. Not only am I learning to change my thoughts, perceptions, and therefore experience in life, I am learning that good things can be found in the most difficult places. I am learning that one’s biology and early life does not determine one’s destiny- that everything in life, including the expression of our genes can change when provided with the right environment.
In this past year alone, I spent many weeks unable to see, unable to walk, and unable to move my body at all (another name for Chronic Fatigue Syndrome is System Exertion Intolerance Disease). I know very well that there can be no “shoulds” in life. Exercising (or doing yoga) is NOT good for everyone. Being a vegetarian (or any other lifestyle of eating) is NOT right for everyone. Walking or reading or engaging with others is not possible for everyone. We all have different chemistries, abilities, injuries, and illnesses which determine what is possible for us. Only we, ourselves, know what is best for us. Our own intuitions and experiences are our greatest authorities.
I am hopeful that in this coming year, I will continue to heal, to learn more about autoimmune diseases and their causes, and to use my knowledge to help others. It is projected that the number of people who suffer with an autoimmune or other chronic “mystery” illness will double or triple with every decade to come. What I have been going through is not without purpose. Neither is anyone else’s suffering.
I wish everyone good health,  hope, and an abundance of courage in the new year. And thank you to everyone who has shown me support in this past one!!

Depression is Not Always a “Bad” Thing

I’ve been suffering both physically and mentally these past few days. I think I was infected with another stomach bug the Monday before Christmas and for the past nine days, I lost all progress that I had been making with my digestive system in the last 2 months. The intense abdominal pain and diarrhea that I had suffered for the last 2.5 years returned. (The fact that I ingested several things on Christmas that are not Autoimmune Paleo approved didn’t help either, and left me feeling like I still have a very long way to go in terms of healing my digestive system alone). And yesterday, my visit with a new primary care physician left me feeling very depressed. She was no more sympathetic or compassionate than the last one. She did not want to repeat any blood work “because nothing would be different than it was in August”. She blamed the massive amount of hair I have been losing for the past 2 months on my new diet and did not want to have my T3 tested like the last doctor. “Why do you want that?” she asked.
“Because sometimes, T4 is not converted to T3,” I said. I told her I wanted to have a full thyroid panel done (free T3, reverse T3, etc), but she said insurance would not cover those tests.
She asked me if I was working and when I said no, asked “Why not?”. I realize that very few people can understand what it is like to have Chronic Fatigue Syndrome if they have not experienced it themselves, but I would hope that a doctor would at least be able to listen compassionately and try to understand. I had explained that I was sleeping 19 hours per day in the summer, that I was not able to even say “hello” to someone, that my brain fog was so strong that I could not read or reach out to anyone for help. “I felt paralyzed,” I told her. “I felt like I was dying.”
She had NOTHING to offer me. Her only suggestion was to see a GI and get a colonoscopy (which I do not want). I asked to see an infectious disease specialist, as I know that viruses are responsible for the onset of Chronic Fatigue Syndrome. She did not think that was necessary. She denied I had any problems with my adrenals and instead tried to make me feel like I had an eating disorder. “Have you been losing weight? Do you think you need to lose any more weight? What is your ideal weight?”. When I showed her the list of lab tests from the book the nutritionist I follow in California wrote, and asked her if she would consider taking any of them, she flipped to the cover, saw “The Loving Diet” and smiled dismissively. I quickly tried to defend the author, but realized neither I nor she had any power in this place. She asked what medications I was taking and I told her none- only vitamins. She wanted to know where I got these vitamins and what they were. I started to list some off the top of my head: Astragalus, Ashwaganda, Cat’s Claw, Vitamin B12, L-Glutamine…
“What are they for? I don’t know anything about these.”
I asked if there was anyone in the network who knew anything about Chronic Fatigue Syndrome. She said she didn’t know- that she would have to ask and get back to me later.
I went downstairs to register and wait to have my blood drawn. An anger rose in me about the medical establishment as a whole. More than 50 million Americans suffer from an autoimmune disorder and an estimated 2.5 million have Chronic Fatigue Syndrome. Western Medicine has NOTHING to offer these people. NOTHING. They are left to fend for themselves, are forgotten, and left to live the remainder of their lives in pain and an unfunctional state. I am grateful that I have found some resources that have started to help me, but I can’t help thinking about all those who haven’t. From my experience, I have learned that anything that falls outside of the standard training that doctors have received is immediately dismissed. Patients are not being listened to, and resources that they have discovered are rejected and actually blamed for their symptoms! (My first doctor tried to blame my vitamins and the second one tried to blame my diet! For the record, I have never eaten this many vegetables in my life and I have cut out many of the harmful foods I had been eating!). This kind of attitude is not only an unfortunate consequence, it is unacceptable and harmful. I have been learning a lot of science in these past couple of months, and most of it I hear about from a nutritionist who stays on top of all the latest research, works with people who suffer from autoimmune diseases, and who regularly attends trainings by knowledgeable doctors in the field. Had I not started the AutoImmune Paleo Diet, my brain would not be working well enough for me to write this now. While I still have a long way to go, I have brought my sleeping hours down to 12-14 hours per day from 16-19, cleared a great deal of my paralyzing brain fog, and started to heal my intestines. During this time, I have also read books that dispute much of what doctors have been taught. Most of the bloodwork that they are performing is completely meaningless. Private companies are now offering much more accurate tests in a number of areas, but these tests are not covered by insurance, are very expensive, and they are not testing what the doctors have been trained to look for. This doctor asked me why I wanted to be tested for Epstein Barr and not Lyme. “You were in areas with ticks. It is more likely you have that.” I simply told her that according to the research I had done, I was not worried about having Lyme. (Besides the fact that I did not have those particular symptoms, I now know that Lyme is also caused by viruses [not bacteria!], and is not even caused by ticks!).

I returned home three hours later feeling defeated, powerless, and no better off than I went in. I sunk back into a tired depression. Later that night, I listened to Marianne Williamson’s latest lecture. To my surprise, she was much softer and more empathetic than usual. In response to someone’s question about constantly feeling depressed and anxious, she mentioned a study by an anthropologist on depressed chimpanzees. As in humans, a similar percentage of chimpanzees display characteristics of depression such as social withdrawal, hyper-vigilence, trouble sleeping, etc.. In this study, the chimpanzees who displayed depressed qualities were physical removed from their tribe. Marianne asked the audience what they thought happened to the remaining chimps when no longer around their depressed members after the researchers returned within a year.

It turned out that all of the remaining chimps were found dead! It was hypothesized that the depressed chimps served as a warning system to the others! They were the ones who were watching for predators, who stayed up and were more vigilant. Without them, there was no one to sound an alarm!
This story instantly perked me up and reminded me that my feelings were valid. There was a good reason I was feeling this way! I also remembered a similar story that Glennon Doyle Melton talks about: canaries in the coal mines. In the old days, miners used to take caged canaries down with them in the mines. When the canaries stopped singing, the miners knew the air was getting too toxic to breathe and that they would die if they didn’t get out.
Sensitive people who easily get depressed are the world’s alarm system! We know when something is wrong. There are a lot of harmful things happening on the earth right now, and one of them is the lack of attention being paid to the toxins in our environment and in our food, as well as the propagation and mutation of viruses that are making us sick. Right now, 1 in 50 children are autistic. It is projected that in the year 2030, which is only 15 short years away, 1 in 2 children will be autistic! This is a staggering figure! The children are warning us. We NEED to listen. Women have also been historically dismissed and labeled crazy for their physical symptoms. 70 years ago, women did not suffer from the menopause systems they do today. The problem is NOT women’s hormones. The problem is the radiation and toxicity that our earth is filled with today. Today, 20 and 30 year old women are experiencing the symptoms of menopause! We can no longer ignore these warnings!

The first thing that we need to do to begin to address these issues is to actually hear one another with complete openness and a beginner’s mind in order to gain an understanding of the root causes behind these diseases. There is no room for ego, no room for an “I know more than you because I hold an MD and you do not.” We must listen to those who are presently struggling with chronic illnesses, to stay on top of the latest research studies, to hear what those who are working with chronically ill patients are learning from the use of supplements, nutrition, and perception changes. The only way that we can begin to heal the earth and ourselves is to open our hearts fully so we can learn from one another and make changes to reverse the harm that has been done. Our emotions are valid. They are telling us very important things.

What am I Eating?

I grew up on a diet of Kellog’s cereal, skim milk, white bread, deli ham, peanut butter and jelly, Twinkies and Hostess Cupcakes, Fruit Drinks, Campbell’s soup, Kraft Macaroni and Cheese, Hot Dogs and canned beans, Oreos, Pinwheel (marshmallow) cookie, Hershey candy bars, Ice Cream, Doritos, and soda (in other words- junk!). On a special occasion, my mother would make “greenbean casserole” of which the directions were found on a Campbell’s soup can. We also had a box of Dunkin’ Donuts on some Sundays. If we ever ate “out”, It would be at MacDonald’s or Papa Ginos. I ate this way for 18 years. By the time I graduated from college, the fanciest restaurant I had ever eaten at was a Chinese food restaurant. I grew up on the campus of a private high school and when in session, my family would often eat our dinners in the cafeteria. This is where most of my “nutrition” came from. This diet, along with the criticism and lack of love I was receiving on a daily basis, formed my constitution. Suffice to say, I had a lot to overcome.

I was speaking with a woman who attended my talk recently about our gut issues and she mentioned that 80 year olds are not suffering from these problems (and don’t understand why we are) because they grew up eating real farm food, which provided them with strong constitutions. Until she said that, I hadn’t thought about the role the diet I consumed in my formative years was playing a part in my current state. My heart sank a little more.

After college, living on a very low income, high in college tuition debt, and not yet having learned to cook, I continued to eat cereal, soup, bread, dumplings, candy and cookies as my staples. I lived in a room in an apartment in which I did not feel comfortable. It wasn’t until I moved into my own apartment that I tried cooking fish and other meals for the first time. Ten years ago, feeling heavier than I wanted to, I bought a no carb diet and workout book and began making the recipes from it (as well as following the strength exercises). This was a deprivation diet, and after the initial 2 weeks, I had a hard time sticking with it. However, three meals from the book became my staples over the next years. I would cook batches of turkey chili, Basque chicken, and ratatouille on the weekends, and bring portions into work to have at lunch. One of the recipes was for tumeric chicken strips. Unfortunately, there was a mistake in the recipe, calling for WAY too much of the spice. When I tried it at work the next day, I felt like I was being poisoned! I could not take more than 2 small bites. Since that time, I have not been able to eat tumeric spice again (which is unfortunate as this is a highly anti-inflammatory food!)… The memory of that incident remained too strong in my body. My breakfasts since that time have also been based on a recipe in that cookbook: egg whites (which turn out to be the bad part of the egg for those with autoimmune diseases!) with shitake mushrooms and tomatoes, and turkey bacon. I went back to drinking coffee and eating cookies and chocolate daily to satiate my sweet cravings. I’ve always felt that I needed to have something sweet after every meal.

Since returning home from the PCT, I have not felt like cooking at all (aside from the same breakfasts I just mentioned). Transitioning back to this other life is very, very difficult (today I was thinking about how that time felt and I am very happy that I am no longer in that space!), and cooking for one person is never fun anyway. Because of my continued stomach pain, I was eating Greek yogurt with berries for lunch. And I would buy soup, or already cooked food from the Whole Foods hot bar for dinner. I thought miso soup was a healthy thing to eat throughout the winter.

In the last few weeks, I have discovered that most of the things I thought were “good” for me (eggs, tomatoes, yogurt, miso soup, turkey chili) were actually slowly killing me!

For the last three weeks, my diet has consisted of:

Breakfast:
-A smoothie with spinach, ginger, turmeric, berries, a bit of green powder, a bit of brown rice protein powder, and goat kefir.
This week, I will start to add in some celery, cucumber, and papaya.
-Green tea

Afternoon “snacks”
-Plantain Chips (LOTS of them! This is my new snack since I can’t have any nut butter, bars, or chocolate). I eat two 9 ounce tubs per week.

-8 ounces of Bone Broth per day

-Usually a sauasge

-(On days where I feel REALLY awful, I allow myself to eat some cacao covered coconut pieces)

Dinner:

-Salmon, chicken, or turkey, kimchi, an array of vegetables consisting of any of the following: collard greens, broccoli, avocado, sweet potato, roasted butternut squash, and occasionally a brussel sprout (blech!)
(A Thanksgiving dinner every night!)

-1/2 bottle Ginger Kombucha

I am following the Auto Immune Paleo diet (an anti-inflammatory diet), with a few exceptions.
Kefir is not approved on this diet, as it is dairy. However, I believe that goat’s milk kefir is okay for me at this point, as it does not contain the harmful components that cow’s milk does.

The brown rice in my protein powder is not approved as it is a grain. However, I personally feel that I need some protein in my smoothies to make them more substantive, and of all the possibilities, brown rice is the safest protein powder base for a person with digestive issues.

My green powder contains goji berries, which are not approved, but I am really not worried about this!

For the first four days of my diet, I ate some sliced bell peppers (gasp!) with my mid-day sausage.

I’ve also eaten sausage with unapproved spices such as paprika and chili, simply because I could not find an alternative.

Cacao is not approved as it is a bean. Sometimes, a girl needs a treat!

The Auto Immune Paleo diet (like any diet) is not a one fits all plan. It has only been around for 2 years and clinicians are now seeing patients who have strictly followed this plan (and are down to 10-15 foods) for a full year or more who are still not healing. There are many possible reasons for this result. One is that every individual has food sensitivities that are specific to them. Some of these foods are on the approved list for the AIP diet. Some people are allergic to the gelatin in bone broth, for example. Despite being told that bone broth should help them, it is actually hurting them! Food allergies and sensitivities cause inflammation in the body and inflammation causes disease. At this time, there is only one fully comprehensive food sensitivity test available. It is performed by Cyrex Labs and is called Array 10. Unfortunately, insurance does not cover any of the cost. A health care provider must order the test and the patient pays the $680 cost. Most of us suffering from chronic diseases are not only not able to work (or work minimally) and can not afford even our basic cost of living, but unfortunately, aren’t able to pay for this kind of information that we need to heal ourselves. Other factors that may cause a person to not get better are hidden co-infections (also a new frontier). For example, a person may be under the attack of several active chronic viral infections that they are not aware they have and which aren’t helped by diet. The science behind these diseases is very, very complicated (immunoglobulins, antigens, antibodies, etc)! Sometimes, a person who is being treated for gut issues will not heal because the brain component of the brain-gut axis is impaired and not included in treatment. The vagus nerve might not be properly communicating to the abdomen. Other people have histamine sensitivities. Because the number of tests to be done are overwhelming, and due to my lack of finances, I am going to do everything I can on my own first. It is also extremely hard to find clinicians who are at all aware of these issues. I can’t reiterate enough how insulting and hopeless it feels to be told by doctors that a person who is physically suffering so much is simply depressed and needs talk therapy. (It is actually NOT helpful to verbally repeat the trauma that has happened to you in the past… This only serves to prolong the cycle of suffering… But that is a topic for another day!)

I have now completed 21 days of this diet, and I am very proud of how well I am doing with it! I do not miss coffee (or chocolate for the most part!) and I do not feel deprived (the key to a lifelong diet)! When I do start to crave foods that I am not allowed to have, I tell myself to settle down, settle down. Usually they dissipate. One major caveat to this type of diet is that you must always stay close to home (at this point, I don’t even have the option for anything else!). I dropped 5 of my extra 10 pounds that I have put on over the course of this last year (yesterday marked the day that my knee fully gave out one year ago) in the first 17 days and am now holding steady. The other five will have to wait until the inflammation in my body subsides (this takes a LONG time) and until I have the ability to work out again. I’ve already noticed an improvement in the inflammation in my brain (if left unchecked, the disease will change the myelin sheath surrounding the brain and progress to early dementia…). I am starting to think more clearly, remember things, and I have finally read my first book in a very long time! (I think this is only the second one I have read this year!). It was “Chronic Fatigue Syndrome: The Hidden Epidemic”, which was excellent, just as my friend had said. I highly recommend it for everyone to read. (It is not being published anymore, but you can still buy it used). It not only helps one understand what it is like to have this condition and how to go about healing it, but it offers great advice for everyone on how to prevent such a disease from happening in the first place. As time goes on, I fully believe that more and more people will struggle with autoimmune diseases due to the poisoning of our food system, and the amount of stress we carry in our lives.
Although this book was published in 1992, the authors fully knew then, as many clinicians are discovering today, that diet and supplements are only ONE part of the healing process. All disease is really an opportunity to examine one’ beliefs about life and make changes that will last a lifetime. It also allows one to examine the stress issues that led to the disease. Changing patterns in the subconscious mind is really the root of healing. Often, people who suffer from autoimmune diseases find it hard to love and forgive themselves. I feel that I have a strong intellectual grasp on what I need to do to heal (and have had so for a long time), but as of yet, I have not been able to actually make the deep changes that I need to. Over the course of these next few months and years, I must undertake the hard work of changing my subconscious beliefs about myself and about the world. Before one can heal their illness, they must first heal their life. This is the journey that I am about to embark on.

Chronic Fatigue Syndrome

I have been in the depths of Chronic Fatigue Syndrome for the past four months (and can now see that it started to make its appearance in April when my thryroid started malfunctioning). In July and August, I was sleeping up to 19 hours per day. I could feel that my adrenals were completely depleted and I thought my life was over. I didn’t want to live in that condition. I couldn’t even respond to e-mails. I would see that someone had written me, and felt the normal feeling of needing to respond, yet my body and brain were paralyzed. It felt as though I was reaching out my hand, but couldn’t make contact. Or that I was opening my mouth, but couldn’t speak. I was so tired that I could not say the word “hello” to someone passing by me. I could barely make it to the grocery store. Living with this disease is like having a shade attached to the top of your head which is always drawn down to your ankles. My head constantly hurt and the few hours that I was awake, I lived in a haze, unable to do anything but watch TV. By September, I realized that I was suffering from Chronic Fatigue Syndrome, in which no amount of sleep replenishes you, and any energy expended further depletes you. I was very fortunate to have a fellow long distance hiker write to me about her experience with the disease. She wrote me one of the best e-mails I have ever received. She told me about the epiphanies she received during this time, gave me the name of the best book written on the subject, suggested I be open to my own miracles happening, and urged me to not attempt to do any exercise (even walking or stretching) for a full six months, among many other things. She also told me that I will never be cured of this illness, although it is possible to put in into remission.
By the middle of the month, I learned that there is a strong link between Leaky Gut (holes in the intestines) and Chronic Fatigue Syndrome! This was precisely what had happened to me! Food leaks through these holes and travels into the bloodstream. These toxins illicit an immune response and create inflammation throughout the body. This inflammation then starts to shut the other organs of the body down. My thyroid and adrenal glands had already been clearly affected. The liver and kidney, and other organs are also at high risk. This systemic inflammation also primes the body for a host of other autoimmune diseases, as well as cancer. Prior to my discovery, both my primary care physician and endocrinologist refused to test me properly for thyroid or adrenal function. I was at my wit’s end, being actively turned away from help. didn’t know what I was supposed to do. But this discovery gave me understanding of what was happening in my body, and steps to start taking to address the root cause. Through serious and very diligent dietary work, I learned that it was possible for some healing to occur within a time frame of 9 months to two years (with the ever present possibility of it returning- especially when not being extremely attentive to what one is eating). I knew that I needed to incorporate kimchi, kefir, and bone broth into my diet on a daily basis, and eliminate all sugar, dairy, and gluten.

I started to eat the kimchi and make smoothies with kefir on a nearly daily basis beginning sometime in September, and by the end of the month, I started incorporating bone broth into my diet. After this last introduction, my intestines became very painful again- a response that surprised me. I decided to take a day off and then only drink 8 ounces per day. The pain began to subside as time went on.

After discovering a wonderful website by a nutritionist named Jessica Flanigan, I realized that I was not going to have a chance at healing unless I eliminated ALL foods that cause an inflammatory response. Because I now have an autoimmune disease on top of Leaky Gut, I needed to eliminate even more foods: Coffee, sugar, all grains, all dairy (including yogurt), eggs, nuts (including almond milk), seeds, all beans (including miso and soy), alcohol, tomatoes, peppers, chili, etc, etc. I read that 95% is not doing the diet. And I got very sad. The initial elimination period lasts from 2-3 months, after which you are allowed to add back in a single item every five days and see how your body reacts. Most people with an autoimmune disorder have to stay on a highly restricted diet for the rest of their lives. Those who suffer from Leaky Gut are in the same situation. The lack of good bacteria and the intestinal holes this produces cause an array of food allergies in the body. I also have been learning that not all those who follow strict diet and supplement plans heal (even after years). There is clearly another piece to these illnesses that represents a more spiritual aspect. This is a topic that I am very fascinated by and will be writing a lot about in the coming months.

I took a weekend to gather my strength and began my very restricted diet on October 19th. Prior to this start, I would often tell myself that I do not even want to live if I can’t have coffee or chocolate. I felt like those were the two things in my life that gave me the most pleasure and I couldn’t see how it was possible to be alive without them. I also thought about my 2 week attempts at no carb diets 10 years ago and how impossible it became to do that sequential times. I didn’t FEEL good. Every body is different and requires different foods. I started to reason with myself that I needed sugar and coffee and that without those things, I wouldn’t have enough energy. But then I thought… My energy can’t get any lower than it is now, and since I can’t move or even stay awake for many hours, I really don’t have anything to worry about. I just had to come to terms with no longer receiving any pleasure from food. It was now purely functional.

And so, Monday morning, I had my first cup of tea, and made my first cold smoothie on a very cold morning (another reason I thought I couldn’t do this…). This is now my only choice for breakfast. I had a raging headache that afternoon and evening, but i got through it (NSAIDS are also off the list). I have now successfully completed day 12. I have learned that when presented with a life or death situation, it is easier to do something very hard and restrictive than when you are merely trying to lose some extra pounds.
I also FINALLY started meditating one week ago. Every night, I have sat for 15-25 minutes! The funniest thing is, after all of that resistance of getting off the couch and moving to the floor, I quickly discovered that I LOVE being in that protective space where nothing can touch me! The ego mind will do everything it can to keep you from doing those things that are best for you! And lastly, I have officially started my study of “A Course in Miracles”!

This path to healing is likely going to be a long one. Most people stay in the acute phase for at least a year. Others spend 8 years, or 20 years, or even a lifetime in it. The famous Buddhist nun, meditator, author, and speaker Pema Chodron has had it for the last 20 years. Currently, I am sleeping an average of 14 hours per day (after 12 hours of sleep, I get up, stay awake for about 4-5 hours, take a 2 hour nap, then stay up for another 4-5 hours- mostly sitting still, watching TV or listening to podcasts). On harder days, I sleep at least 16 hours. My body still has no ability to recover, which is one of the hardest things about this illness (Goodbye hiking!!). When I do more than sit all day, I have to sleep at least 14 (sometimes 16)  hours overnight. My body feels like a cement block and most of the time, I can not even open my eyes. In the last 4 months, I have not been able to sleep less than 12 hours per night. I have only had to give my talk 5 times in the last 3 months, but I couldn’t have done any more than that. My brain started to become impaired and I was losing my memory. And each talk would wipe me out for up to a week afterwards. Another hard aspect of this illness is its invisibility. People who see me on a rare occasion don’t see me as a sick person. They have no idea what my daily experience is like. If I were on crutches or in a cast, some people might extend more sympathy, but no one knows what I am and have been going through. They also can’t comprehend what the experience is like having never gone through it before. I did meet one woman who came to my talk this Tuesday who told me she had suffered from it. She said those were the worst months of her life. She had a constant, very painful headache for 4 months, felt that she was a burden on her family, and wanted to end her life. This is an extremely difficult prolonged experience. No one asks for a chronic illness. It robs you of your life. But I am excited to dive into a deep period of learning and healing and see what arises if I manage to break through to the other side!

I look forward to sharing my experience with you!

Thank you for following.
And thank you for your patience!