Tag Archives: Autoimmune Disorder

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

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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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Time for a New Year

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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!!