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Wednesday, September 05, 2018

Researching Autoimmune Disease-What I've Learned So Far Part I: Treatment Modalities

"Research is formalized curiosity. It is poking and prying with a purpose. "  ~ Zora Neale Hurston, American author and anthropologist, 1891-1960.

     About four months back I promised in one of my blog posts that I would share what I found after researching Irritable Bowel Syndrome (IBS) and Crohn's Disease. Needs must as they say, and my personal health requirements drove me to research as much as I could about this topic in order to have a better understanding of my own body, the illness with which I have been recently diagnosed and the treatments available through both modern and alternative medicine.
     Crohn's disease as standard modern medicine defines it, is an Auto Immune (AI) disease of the digestive tract in which the immune system for reasons unknown, attacks the small  and large intestines, causing scarring and a shut down of the digestive tract's ability to function in harvesting nutrients for our body and disposing of waste. It falls under the umbrella category of IBS, which also embraces a wide canvas including other symptoms such severe bloating, gas, and cramping, diarrhea and constipation that come and go over time and last days, weeks, or months, and Colitis which is inflammation of the rectum and the colon. Modern medicine has no answer for what causes IBS and its relatives Crohn's and Colitis. Sometimes diagnostic tests can pinpoint an infection of the bowel but most of the time there is no one thing that points to what caused the disease. All three conditions may also be accompanied by fever, fatigue and high white blood cell count. All three are chronic, progressive diseases for which there is no known cure.
     How does Crohn's Disease differ from Colitis? It affects the entire digestive tract which is inflamed and ulcerated, most commonly the Ileum which is the last part of the small intestine, and the large colon. The ulcerative areas are usually patchy with healthy gut in between. These ulcers may affect the surface of the bowel or be embedded deep in the bowel wall. The symptoms for Crohn's in addition to the ones listed above for IBS/Colitis are blood in one's stool, mouth sores, malnutrition, hair loss, secondary skin rashes, loss of appetite and weight loss, anal fistulas causing a great deal of pain and bleeding as the rectum is part of the colon and becomes ulcerated which causes fistulas to form.
     Other more serious health issues often accompany Crohn's such as skin problems, mouth ulcers, blisters and ulcers on the skin, and painful red swellings, usually on the legs; inflammation of the eyes, thinner and weaker bones, liver inflammation, blood clots (including deep vein thrombosis), and anemia (a reduced level of red blood cells). Around one in three people with IBD experience inflammation of the joints, usually their elbows, wrists, knees, and ankles. More rarely, the joints in the spine and pelvis become inflamed – a condition called ankylosing spondylitis. This can cause stiffness and pain of the spine.
     Who develops Crohns? It is a disease primarily of urban, northern areas in developed nations. It is more likely to affect Caucasians of Ashkenazi Jewish descent (Jews from Russia and Eastern Europe). It can begin at any age from 10-40 and Crohn's is on the rise in children and teenagers. It is more common in women than men, and in smokers. My only resemblance to any of the above groups is being a female living in a developed northern country.
     Modern medicine classes Crohn's as one of the 89 known AI diseases, for which there is no known reason why they occur. Treatment tends to be similar across the AI spectrum with pharmaceutical drugs used as a cocktail to shut down the immune system and decrease inflammation in order to bring about remission. Many of these drugs were originally designed to treat cancers. Once the condition is under control, your doctor will usually continue to prescribe drugs to maintain remission and prevent relapse – this is called maintenance treatment and it means an AI sufferer will be on those medications for the rest of their lived. In some cases, if medical treatment is not effective, then surgery may be required and a stoma may be needed. One last caveat; none of these drugs cure any AI disease and most do not actually slow the progression of the disease over time. All AI diseases are chronic and progressive. 

Modern Medical Treatment 
     For inflammation the following drugs are usually prescribed:  
     Corticosteroids such as prednisone and budesonide (Entocort EC): these drugs can help reduce inflammation in your body, but they don't work for everyone with Crohn's disease. Doctors generally use them only if you don't respond to other treatments. Corticosteroids may be used for short-term (three to four months) symptom improvement and to induce remission. Corticosteroids may also be used in combination with an immune system suppressor.

     Side effects of Corticosteroids are an increase in appetite, weight gain, insomnia, fluid retention, moodiness and irritability, anxiety, osteoporosis (weak bones), hypertension (high blood pressure), diabetes, increased vulnerability to infection, cataracts and glaucoma, thinning of the skin, bruising easily, and muscle weakness. In women corticosteroid use frequently causes extremely heavy, dark hair growth all over the face, requiring daily shaving as men do. Some patients find they gain a massive amount of weight on steroids which are a class or hormones, and some experience a locking of their joints and an inability to bend at the wrists, elbow and knees. In addition those undergoing corticosteroid use as is sometimes the case for some cancers, may develop what is termed "moon face" as Les did in the last months of his life, where the weight gain and fluid retention causes a distortion of the facial features.
     Oral 5-aminosalicylates: These drugs include sulfasalazine (Azulfidine), which contains sulfa, and mesalamine (Asacol HD, Delzicol, others). Oral 5-aminosalicylates have been widely used in the past but now are generally considered of limited benefit.
     Side effects of these drugs are headaches, rash, nausea, abdominal pain, vomiting, fever and diarrhea. In small numbers of patients these drugs are linked to pancreas and kidney problems. In these drugs, salicylates are synthetic aspirin compounds. 
Immune system Supressors:
     Azathioprine (Azasan, Imuran) and mercaptopurine (Purinethol, Purixan). These are the most widely used immuno-suppressants for treatment of inflammatory bowel disease. Taking them requires that you follow up closely with your doctor and have your blood checked regularly to look for side effects, such as a lowered resistance to infection and inflammation of the liver. They may also cause nausea and vomiting.
     Infliximab (Remicade), adalimumab (Humira) and certolizumab pegol (Cimzia). These drugs, called TNF inhibitors or biologics, work by neutralizing an immune system protein known as tumor necrosis factor (TNF). There have also been rare reports of serious blood disorders with some of these drugs along with symptoms such as persistent fever, bruising, bleeding, paleness, pain, muscle weakness, numbness and blurred vision, blocked or runny nose, headache, dizziness, flushing, rash, abdominal pain or indigestion.
Methotrexate (Trexall): This is a cytotoxic chemotherapeutic drug used in the treatment of  cancers of the breast, skin, head and neck, and lungs, along with some leukemias and lymphomas as well as many AI diseases. Methotrexate is a type of anti-metabolite which means it stops cells from making and repairing DNA--the instructions for the repair of every cell in your body.
     Side effects may include black tarry stools, blood in urine or stool, bloody vomiting, nausea, diarrhea, joint pain, reddening of the skin, sores on the mouth or lips, stomach pain, swelling of the feet and lower legs, hair loss, loss of appetite, and less common side effects are boils, red, itchy skin patches, back pain, blurred vision, confusion, seizures, dizziness, drowsiness, fevers and chills, headache, painful urination, shortness of breath, unusual bleeding or bruising, and severe jaundice (yellow eyes and skin). Methotrexate use can activate a virus that increases the risk of developing Lymphoma which is cancer of the immune system.
Natalizumab (Tysabri) and vedolizumab (Entyvio): These drugs work by stopping certain immune cell molecules — integrins — from binding to other cells in your intestinal lining.
     Side effects of these drugs are upper respiratory and urinary tract infections, headache, depression, diarrhea, stomach pain, rash, nausea, fatigue, fever, pain in hands and feet, joint pain. Natalizumab use raises the risk of a rare but potentially fatal brain infection called progressive multi-focal leukoencephalopathy. It can also cause allergic reactions and liver damage.
Ustekinumab (Stelara): Monoclonal antibodies are laboratory-produced molecules engineered to serve as substitute antibodies that can restore, enhance or mimic the immune system's attack on cancer cells. They are designed to bind to antigens that are generally more numerous on the surface of cancer cells than healthy cells. Bear in mind that while monoclonal antibodies attack cancer cells they also affect healthy cells. Here is what they do:
     Some immune system cells depend on antibodies to locate the target of an attack. Cancer cells that are coated in monoclonal antibodies may be more easily detected and targeted for destruction. Some monoclonal antibodies can trigger an immune system response that can destroy the outer wall (membrane) of a cancer cell. Some monoclonal antibodies block the connection between a cancer cell and proteins that promote cell growth — an activity that is necessary for tumor growth and survival. In order for a cancerous tumor to grow and survive, it needs a blood supply. Some monoclonal antibody drugs block protein-cell interactions necessary for the development of new blood vessels. Certain proteins that bind to immune system cells are regulators that prevent over-activity of the system. Monoclonal antibodies that bind to these immune system cells give the cancer-fighting cells an opportunity to work with less inhibition, i.e. they suppress the immune system. Certain monoclonal antibodies may attack cells more directly, even though they were designed for another purpose. When some of these antibodies attach to a cell, a series of events inside the cell may cause it to self-destruct.

     Common side effects are allergic reactions such as hives and itching, flu-like signs and symptoms including chills, fatigue, fever, and muscle aches and pains; nausea, vomiting, diarrhea, skin rashes, low blood pressure.
     Serious but rare side effects are severe allergic reactions which lead to death; low blood cell counts that are severe and persistent. If your red blood cell count is low your body becomes starved of oxygen due to anemia. Your heart has to work harder to compensate for the lack of oxygen and this can lead to an enlarged heart and heart failure.  If your white blood cells are low you can develop neutropenia which leads to infections like Sepsis. Certain monoclonal antibodies increase the risk of high blood pressure, congestive heart failure and heart attacks. Some monoclonal antibodies are associated with a higher risk of inflammatory lung disease. Sores and rashes on your skin can lead to serious infections. Serious sores can also occur on the tissue that lines your cheeks and gums (mucosa). Monoclonal antibody drugs designed to stop cancer from forming new blood vessels have an increased risk of severe internal bleeding.
Ciprofloxacin (Cipro) and Metronidazole (Flagyl): Cipro is often used to treat bone, joint, intra-abdominal infections and Typhoid Fever. Flagyl is used to treat pelvic inflammatory disease, endocarditis, and bacterial vaginosis. It is effective for giardiasis, trichomoniasis, and amebiasis. It is an option for a first episode of mild-to-moderate Clostridium Difficile colitis  (Cdiff). Flagyl is particularly effective at treating parasitic infections of the digestive tract.
     Side effects of Cipro are diarrhea, dizziness, drowsiness, stomach upset, abdominal pain, nausea/vomiting, blurred vision, nervousness, anxiety, agitation, insomnia and nightmares. Serious but less likely side effects are fainting, heart arrhythmia, sudden pain, snapping or popping sound, bruising, swelling, tenderness, stiffness, or loss of movement in any of your joints; contact your doctor immediately if you experience watery or bloody diarrhea; confusion, hallucinations, depression, unusual thoughts or behavior; seizure (convulsions); severe headache, ringing in your ears, pain behind your eyes; pale or yellow skin, dark colored urine, fever, weakness; urinating less than usual or not at all; easy bruising or bleeding; numbness, tingling, or unusual pain anywhere in your body; the first sign of any skin rash, no matter how mild; or severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.
     Side effects of Flagyl are nausea, metallic taste, loss of appetite, headache, abdominal cramps, diarrhea, dizziness, dry mouth, and fever.  Uncomfortable side effects which may become serious are pain with urination, tingling or pricking sensations that become permanent (neuropathy), seizures and brain disease.
Other Medications 
Anti-diarrheals: A fiber supplement, such as psyllium powder (Metamucil) or methylcellulose (Citrucel), can help relieve mild to moderate diarrhea by adding bulk to your stool. For more severe diarrhea, loperamide (Imodium A-D) may be effective.
Pain relievers: For mild pain, your doctor may recommend acetaminophen (Tylenol, others) — but not other common pain relievers, such as ibuprofen (Advil, Motrin IB, others), naproxen sodium (Aleve). These drugs are likely to make your symptoms worse, and can make your disease worse as well.
Iron supplements: If you have chronic intestinal bleeding, you may develop iron deficiency anemia and need to take iron supplements.
Vitamin B-12 shots: Crohn's disease can cause vitamin B-12 deficiency. Vitamin B-12 helps prevent anemia, promotes normal growth and development, and is essential for proper nerve function.
Calcium and vitamin D supplements: Crohn's disease and steroids used to treat it can increase your risk of osteoporosis, so you may need to take a calcium supplement with added vitamin D.

     Given that I am allergic to many of components of the prescription drugs used to treat Crohn's and the side effects of most of the drugs are too toxic for me to risk, I also researched alternative treatments and therapies and began to compare and contrast both methodologies. While researching this I came across Functional Medicine Specialists (FMS). These are individuals with either a degree as a Naturopathic Physician (ND) or a Medical Doctor (MD) both of whom specialize in holistic treatment of the entire person versus a particular disease in isolation from the rest of the patient and/or programs that support and encourage wellness rather than treatment only of disease or symptoms. FMS practitioners do not focus on addressing symptoms. Instead they ask Why? What is causing this illness?
     I found an on-line medical seminar addressing AI diseases. This seminar was free for the first nine days and was written and produced by respected FMS from around the world including Britain, engaged in serious, verifiable clinical research on AI diseases and the gut. I took copious notes and I found their research was checked and supported by universities and research papers published in the following: Frontiers in Immunology--one the world's top ten journals for the study, research and advancement of treatments for Immune diseases; the journal Science; Yale University; the journal Cellular and Molecular Immunology; the Oxford Academic Journal of Rheumatology; the University of Maryland School of Medicine; the journal of Gut Microbiota Research and Practice; the journal Naturopathic Doctor News & Reviews; the University of Colorado; the Journal for Integrative Practitioners; Scientific American magazine; and over fifty published research papers are available through PubMed Central which is an on-line data base of research papers on file with the National Institute of Health's U.S. National Library of Medicine.  
     All of these resources are hailing a new frontier in the treatment of AI diseases due to the recognition that all auto Immune diseases begin in our gut.  Now I am going to try and distill four months of research down for readers who are interested in this topic. This will take me more than one post!
     I could not find world wide statistics for AI diseases or for Britain but the stats for the U.S. are up from nine million in 2000 to 80 million today. In 1900 1 in every 10,000 members of the American public developed an AI disease; today it is 1 in every 250. As the majority of communicable maladies have decreased in spread, national and international public health organizations have focused their sites on non-communicable illnesses with a specific focus on AI diseases which are growing faster than any other disease in the modern era all over the world. This includes the U.S. National Center for Disease Control, The World Health Organization, and the European Parliament. Our world and all of us on it are facing a global epidemic of AI disease for which modern medicine researchers and practitioners say they have no clear idea of the cause of either AI diseases or the rise in them.  
     A lot of folks think AI diseases are peculiar, rare illnesses such as Evans Syndrome or Parry Romberg Syndrome Some folks are familiar with Lupus and Coeliac Disease, but a lot of people remain unaware that Diabetes Type 1 also known as Juvenile Diabetes is also an AI disease. (For a comprehensive list of AI diseases visit THIS web page.)
     The major diagnostic criteria for an AI disease is presence of auto antibodies (B cells in the blood stream). As a rise of B cells in patients linked to AI diseases occurred, medical researchers began asking questions. Is there something occurring that is convincing the human immune system that parts of the body are "other"? Is modern culture too healthy? Could it be the case that the immune system no longer has enough to do? Could AI diseases be caused by a rise in over-exposure to 20th and 21st century chemicals and toxins?
     In the last thirty years chemicals such as flame retardants, pesticides, herbicides, and PVCs (polyvinyl chlorides) have been used with such ubiquity that everyone on our planet is exposed to them and that includes babies in their mother's wombs even in poor third world countries and isolated cultures without the benefits of 21st century technology. Another correlation is that in 1900 the average life span was 49 years and now we live much longer. The Japanese live the longest at an average life span of 84 years with the life spans for Brits at 81 and for Americans it is 78. 
     150 million people world wide are diagnosed with AI disease every year. The latest research indicates five years before a firm diagnosis of an AI disease the  process begins to manifest itself in our bodies. Only once all clinical signs and symptoms are present and an antibody test has been done will an AI diagnosis be given. Research has found that five to ten years prior to clinical appearance there is a pro-dromal period in which the antibodies are present in a patient signaling an AI disease is developing. For modern medicine practitioners (MDs) nutrition is not taught in medical school and doctors fail to learn that food could have much to do with medicine. 
     Functional Medicine Specialists take a very long and detailed history of each patient going all the way back to birth. They look at diet, stress, exercise, work, addictions, daily habits, hours of sleep, hobbies, travel, every disease a patient has had, living conditions, family relationships, allergens, microbes, toxins, hormones, diet, and then the patient takes the antibody test. From the mined information received, an FMS will offer a medical diagnosis and begin to build a personalized therapy because we are all different. There can be 14 patients with 11 different factors inducing the same disease and FMS do not prescribe drugs to turn off symptoms or to delay or reduce them because this method of treating a disease seldom offers a cure or even a healthy reduction of disease. 
     It has been found that toxicity is the driver in the 21st century, specifically pesticides, hormones, synthetic chemicals, and artificial manure. There were 650,000 food related deaths in the U.S. last year. Functional Medicine Specialists recognize something standard medical practitioners have forgotten or are no longer taught: the secret of caring for the patient is caring for the patient. An FMS will spend an hour and half with a patient at their initial appointment and one hour each time they are seen after this. Their goal is to know each patient so thoroughly they can begin to help their patient with appropriate treatment that reduces immune over-activation rather than using pharmaceuticals to squash inflammation or totally shut off the immune system.
     One British Medical Journal study found that the three main causes of death in this country are heart disease, cancer and medical error--improper use of prescription medications. This is an indictment of the medical system which refuses to recognize doctors need to spend more time getting to know their patients, and the chronic over reliance on the idea of treat or cure the disease (not the patient) by relying on drugs. Too often these days patients are told only drugs and nothing else, can cure their disease. The United States health care system is ranked 37th worldwide for which its patients pay millions. Britain is ranked 18th and Canada 30th (France is number 1). Medicine is the only business that continues to grow despite failing its customers. No other business could continue under the same premise. The way in which a person processes drugs may do more harm than good and this is seldom taken into account. Patients are sold the big lie that "you are just getting old," and menopause is a good example of this. HRT is a pharmaceutical industry worth billions. Depression is another example of disease and dehumanization instead of looking at what a person is experiencing as part of the spectrum of normal human experience. I'll use myself as an example. My husband died 18 months ago and I am depressed. I don't need drugs to deal with my depression. It is situational and if I take the time to work through my grief my depression will lessen. This is part of the spectrum of life--not a disease for which I need to pop a pill. Now I can already hear the outraged voices indignantly calling, "I wouldn't do without with my HRT," or "I couldn't function without anti-depressives." I am not saying drugs should never be prescribed. I am saying they should not always be prescribed and this is an important distinction. 
     This over reliance on prescribing drugs to fix patients is taught in medical school. Diagnosis/prescription. An example of this is the use of chemo drugs to treat AI disease. The collateral damage to the patient is exponential as you may judge for yourself from the information I've provided previously,  as pharmaceutical companies feed off of and profit from mistreatment (and to be honest so do some doctors). I am willing to give most doctors the benefit of the doubt in saying they earnestly seek to lessen their patient's pain. Sadly too often the reverse is the outcome as one drug creates intolerable side effects so another drug is prescribed to address the side effects of the primary medication and it too has side effects for which yet another drug is prescribed and so on. I personally have known friends and family members on as many as nine different drugs, with four or five contra-indicated for one another! This is extremely common and actually shortens our life span as the dug companies rake in profits of over 100 billion annually but fail to lead patients to a healthful resolution of their medical issues. 
     Those of us who are diagnosed with an AI disease will live 26 years less than the average person because in the process of treating our symptoms, the drugs prescribed cause cancer. What limits does medicine, as it is currently practiced and we as customers of this system, fail to acknowledge? The goal of medicine should be to help us achieve a healthy life span versus longevity. Doctors should be on a journey with each of their patients and we as patients must be actively involved and responsible for doing our part. Health care practitioners are there to be "in service" to their patients. Modern medicine seems to have lost site of this.  
     Diet, lifestyle, our food supply, and how we treat our environment must change and those changes will be driven by us, not those who own the companies. Medicine is changing (not fast enough to suit me but then I am impatient when it comes to people's lives) because information is now in the hands of the people. Okay I will stop here and continue in a new post in a few days with more specific information specifically about AI disease, causes and treatment.        


Anonymous said...

Jaq - thank you thank you thank you. As one who finally capitulated and got rid of my colon due to 60 years of fighting ulcerated colitis I recognized almost everyone of the awful medications you mentioned. Looking forward to the second installment on alternative therapies. One man I know with debilitating chron's disease got sustainable major improvements on the Vegan Diet. Best to you lady. Another Very hard challenge for you.
Lovely weather in Pullman. Karen

Quaysider said...

Hey Jaq - interesting but Scary reading there ... especially since both my parents take quite a few of the drugs you mention... my father's side being majorly troubled with bowel diseases - that seem to have followed their way through to my generation now.

Since dad's bowel perforated and the resultant stoma, he's actually doing very well now... for someone who used to be squeamish, he's taking it all in his stride now and has become my mothers full time carer as she deteriorates further into vascular dementia.

There's a bit of me that thinks "just stop taking all these drugs" that create other problems and see what happens...

Patti said...

Great research, Jaq, really interesting. Jeff was "diagnosed" with crohn's, but I suspect it wasn't the entire truth of things. He didn't have most of the symptoms you listed. He was given Remicade, a $10,000 drug at the time 14 years ago. And then died 3 weeks later. I love that you are advocating not just for yourself but for all of us by distilling this info in a way we can understand better. Thank you!

Mrs. Jaqueline Biggs said...

Hi Karen,

It is always a privilege and a pleasure to share knowledge with others in the hope it will shed light in the dark places.

I know personally some of what you've endured with your IBS. You are one tough cookie!

I am glad to read the weather in Pullman has improved. I hope you enjoy some of it.

Love Jaq xxx

Mrs. Jaqueline Biggs said...

Hi Simon,

I am sorry to read your parents have suffered so many health difficulties and that some of them are manifesting in you. The best thing we can do is educate ourselves and then make good choices about our health and lifestyle so we never have to take even one prescription drug if we can help it. Sometimes they are necessary for thins like fighting a deep seated infection but the more control we have over our health in the decisions we make regarding our food, drink, and lifestyles then I believe we will live longer, healthier lives which is key. No point in living longer if we are continually ill, and unable to care for ourselves as we age.

Your dad sounds like a wonderful mand and I suspect you are a chip off the old block.

Jaq xxx

Mrs. Jaqueline Biggs said...

Hi Patti,

Thank you! I remember when you and your family were going through that horrendous trial. Jeff's mistreatment is a prime example of throwing drugs at a patient to treat disease symptoms.

There is more interesting stuff to come in the next three posts. .There is an interesting link in gluten intolerance an asthma at the genetic level.

My love to you and Steve,

Jaq xxx

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs