Lupus Advocacy Day

I had the privilege of representing Lupus patients from my home state at Lupus Advocacy Day on Capitol Hill March 1, 2011.

Lupus Advocacy Day

It was interesting to hear about the programs the Lupus Foundation has lobbied for to help Lupus patients. It was even more exciting to meet with the representative and talk to them about how Lupus has affect me and my family. I was surprised by how interested they were. The house of representative that I met with even took time right before having to vote on a continuing resolution to keep the government open. He kept asking question about my story and was horrified by my experiences. He’s eyes grew large when I told him I finally had to travel and pay a doctor out of pocket to get a diagnosis. He was shocked when I told him the doctor spent two days on my case. It took her over six hours just to read through my medical records and try to piece together what happened. That’s why the doctor couldn’t take insurance. No insurance company will reimburse a doctor for that amount of thinking time, but sometimes that’s what it takes. He seemed to understand that Lupus needs better technology to help make a diagnosis.

Please take the time to contact your representatives with your story and why funding for Lupus is so important.

Contact Your Representative

Some of the things the Lupus Foundation is fighting for:

Funding at the NIH

Congressionally Directed Medical Research Program for Lupus

Eliminating Health Disparities in Lupus Initiative from the Office of Minority Health – This is a national health care provider education initiative to improve diagnosis and treatment of Lupus. Aka they are changing the way doctors are taught to diagnose and treat Lupus.

Continued funding for the add campaign, “Could I Have Lupus?” from the Office of Women’s Health. This program promotes public awareness of Lupus.

Low Testosterone and DHEA in Lupus

Researchers have discovered that both men and women with autoimmune diseases have low levels of androgenic hormones or the male sex hormones such as testosterone and DHEA. It is believed that people with autoimmune diseases metabolize testosterone too quickly.

“Low levels of sex hormones are seen in one-third of men with an autoimmune disease – and that’s every autoimmune disease across the board, says Dr. Lahita. In the other two-thirds, there are not low levels of androgens, so the cause is unknown,” he says. Testosterone is protective, at least in men, he notes. We also know that women with lupus metabolize testosterone so rapidly that their levels of the male hormone are low to nonexistent. Lack of testosterone appears to be a key in lupus. So why not give testosterone to people with lupus? We tried it, and it really didn’t work, Dr. Lahita says. The FDA recently rejected approval of prasterone (Prestara), a drug based on a weak form of testosterone, for women with lupus.”

Gender Differences In Health Care

Another article from pub med acknowledging low testosterone and DHEA in Lupus, but also saw no real positive results when giving patients testosterone.

“CONCLUSIONS: Testosterone patches were safe but did not significantly affect disease activity, quality of life or sexual functioning. Increased use of steroids in the placebo group may have confounded the study results.”

Testosterone patches in the management of patients with mild/moderate systemic lupus erythematosus.

I did find one article that was positive about testosterone and DHEA replacement in Lupus.

Interestingly, researchers in animals and humans are reporting that testosterone can reduce the body's inflammatory response. There are reports that the inflammatory states of Crohn's disease, rheumatoid arthritis, diabetes vaculitis and now Lupus erythematosis may improve when treated with anabolic steroids (testosterone, DHEA and human growth hormone). This benefits of anabolic steroid therapy are, therefore, not limited only to men. It now seems that for these diseases, testosterone works well for women too.

Edward Litchen

Both my DHEA and testosterone levels were low. My DHEA was below detectable levels. DHEA is available over the counter, but I only took DHEA under doctor’s orders. I first tried 25 mg twice a day and noticed an improvement in mood and general outlook. Then they had me try 100 mg a day. I felt a little better than the 50 mg, but my face became very oily and I developed acne.

Next, I saw an Endocrinologist who specialized in adrenal glands and he said his Addison’s patients (whose bodies can’t make DHEA) do much better with 25 mg of DHEA and 2.5 mg of testosterone in a cream form. So he tried me on the same treatment. I felt the best on the DHEA / testosterone combination and my skin returned to normal. My autoimmune symptoms are adequately controlled by prednisone and Immuran. Even with the prednisone and Imuran, I do have a lingering rash on my knuckles and minor joint pain that will probably never completely go away. The addition of DHEA / testosterone did not improve the rash or joint pain.

I guess I’d have to agree with the researchers that the DHEA / testosterone didn’t have a big impact on my disease course. However, I would disagree with them when they said they saw no benefit. It greatly increased my quality of life by treating my depression without having to take anti-depressants. I think that is huge and worthy of treating the hormone deficiency. While I still have fatigue and the feeling of being weighed down all the time, I do have more energy and stamina. It’s like I’m able to endure the fatigue better and keep going. I used to have to lay down for at least 30 min. a day to make it to the end of the day and now I can keep up with my friends without stopping. I’m still tired at the end of the day, but I feel better since I am able to accomplish more. My husband can tell a dramatic difference in my mood which has made his life better as well. I like to tell people I may still have fatigue and pain, but at least I'm happy about it now!

Glutamine and Lupus Hair Loss

I haven’t been very successful at finding legitimate medical resources about this blog post, but maybe someone else out there has additional information. I recently saw an endocrinologist for adrenal insufficiency from taking steroids over the years. He recommended taking L-Glutamine to help with my weakness since it is supposed to help build muscle. Besides helping with my weakness I noticed my hair drastically changed textures and started rapidly growing even in my thin spots from Lupus. My skin is also very smooth and heals much faster after the inflammation has stopped from the Lupus rashes. The changes in my hair occurred within a week of taking 15 g twice a day. It comes in a powder that you add to your favorite drink. Look for the USP grade. I ran out of the L-Glutamine 5 days before the next order arrived and my hair changed back to being brittle and fragile within a couple days. I’ve tried lots of shampoos over the years to help with the thin hair due to Lupus and nothing seems to help. The L-Glutamine is amazing. My hair dresser was shocked. While not a respected medical journal article, the following link had some good information about L-Glutamine.

Glutamine

It sounds like L-Glutamine could be good at treating autoimmune diseases. However, I couldn’t find anything in pubmed about L-Glutamine being used to treat autoimmune diseases. The closest article I could find was a dermatology article from Cambridge that explained the Glutamine is important and necessary for hair growth.

Metabolism of Freshly Isolated Human Hair Follicles Capable of Hair Elongation: A Glutaminolytic, Aerobic Glycolytic Tissue

Someone should really tell the rheumatologists about L-Glutamine.

Use of Imuran or Azathioprine During Pregnancy

Once my body had settled down thanks to Azathioprine (AZA), my husband and I wanted to try to have a baby. I was advised to stop AZA because it is a class D drug that would more than likely cause a birth defect. After 6 months off AZA, I had a flare and had to go back on the drug. I was told it was probably best not to have children since I couldn’t get off AZA.

Heartbroken and not willing to give up our dreams so quickly, I started reading journal articles again so we could make an informed decision. After reading the studies on AZA and pregnancy we decided to try to conceive while I was on AZA and then immediately stop once we found out I was pregnant. Everything did turn out well. We have a perfectly healthy boy and I luckily stayed in remission while pregnant even off AZA. However, four weeks after giving birth I did flare again and had to be put back on AZA. There is no way to know if pregnancy will put a patient in remission or cause a more serious flare. It was a risk that we took and trusted God would protect us. Below are some articles that may help you and your doctor make an informed decision or at least help you ask questions.

A Danish study in 2003 claimed an increase in birth defects in women taking AZA. The study looked at 10 pregnancies.

Azathioprine, mercaptopurine and birth outcome: a population-based cohort study

In 2007, the same authors of the 2003 Danish study published another articles using a larger study population of 76 pregnancies. They still noted increased birth defects in their study, but this time they compared the results to people with the same disease but not taking AZA and concluded that the birth defects were more likely caused by the disease itself and not AZA.


Birth outcome in women treated with azathioprine or mercaptopurine during pregnancy: A Danish nationwide cohort study

This next article states that AZA does cross the placenta, however only the inactive form of AZA crosses the placenta. The fact that the active form of AZA, 6-MP, does not easily cross the placenta protects the fetus from the effects of AZA during the early months of pregnancy because the fetus’s liver is not formed enough to convert AZA into 6-MP.

In utero exposure to immunosuppressive drugs

Three cases of successful pregnancies with healthy babies born to mothers who continued AZA therapy throughout their entire pregnancies. Both the mother’s and baby’s blood were tested for 6-MP after delivery. The mothers were found to be therapeutic and all three babies had undetectable amounts of 6-MP.

Azathioprine use during pregnancy: unexpected intrauterine exposure to metabolites

This article gave us the most confidence in conceiving while on AZA. The above articles were all foreign studies, but the following article was authored by researchers at Mount Sinai in New York. It looked at a much larger group of patients, 155 pregnancies with some exposure to AZA. The study results concluded that the birth defect rate among AZA users was the same as the national average. It also pointed out the reported birth defects were all different. There was not a single consistent birth defect among the babies.

The safety of 6-mercaptopurine for childbearing patients with inflammatory bowel disease: a retrospective cohort study

HELLP Syndrome in APS and Lupus

I had never heard of the HELLP syndrome until after having my first baby. My symptoms went into remission and the pregnancy went smoothly. I did go into labor 4 weeks early, but it turned out to be a blessing and probably saved both my life and my baby’s. HELLP stands for Haemolysis, Elevated Liver enzymes, and Low Platelets. The HELLP syndrome is a rare life threating complication of pregnancy. Even though the hallmark sign of the HELLP syndrome is a low platelet count, the HELLP syndrome is actually a clotting problem. Something triggers the clotting cascade and the platelet count drops as multiple clots are formed throughout the body including the liver, which ultimately shreds the red blood cells leading to anemia. The only way to stop HELLP and save the mother’s life is to deliver that baby no matter if the baby is able to survive on its own or not. Patients with APS or Lupus are at a higher risk for developing HELLP. Lovenox and aspirin are given to help prevent the HELLP syndrome in Lupus patients. Even on both medications, I still developed the HELLP syndrome. Usually patients developed pre-eclampsia with elevated blood pressure and protein in the urine before developing the HELLP syndrome. I was an unusual case in that my blood pressure was a perfect 120/80 and I didn’t even have a trace of protein in my urine. It’s important for APS patients to be screened using blood work to catch complications before they go undetected too far.

The HELLP syndrome in the antiphospholipid syndrome: retrospective study of 16 cases in 15 women.

HELLP-like syndrome associated with hepatic necrosis in a patient with systemic lupus erythematosus.

Invalid INR tests in APS patients

Most doctors don’t realize that INR tests may not be accurate in patients with APS or Lupus patients positive for Lupus anticoagulants. It was a nightmare to regulate my INR levels while I was on Coumadin for a DVT. I had to take a fairly large dose of Coumadin to get my INR within therapeutic ranges. Just when everything would seem stable, my INR would drastically spike to a high value. My blood work was like a rollercoaster and I had to have my INR checked weekly. After I was diagnosed with APS, the doctor explained that the antibodies themselves can cause the INR test to read too high or too low. Sometimes the finger stick machines will actually display an error when testing a patient with APS. Looking back, I was probably the patient that was really supratherapeutic (blood was thinned too much) even though the tests showed that I was subtherapeutic. This is another example of how lab tests are not always correct and if doctors are not aware the consequences could be dangerous. Below are some journal articles explaining the INR test issues. Their results showed that the chromogenic factor X and prothrombinproconvertin time assays were the most accurate methods to monitor coagulation in APS patients.

Monitoring Warfarin Therapy in Patients with Lupus Anticoagulants

INR Monitoring in Patients with Antiphospholipid Antibodies with Finger Stick INR Devices

Chilblains Lupus

Chilblains (sometimes called perniosis) are extremely painful sores that appear on the extremities such as fingers, toes, and ears. The red swollen sores usually occur during very cold yet humid conditions. If the sores last for extended periods of time or occur during warm weather, the Chilblains are more than likely caused by a connective tissue disease. Chilblains are most commonly associated with Lupus but are also seen in patients with undifferentiated connective tissue disease and Raynaud’s.

Clinical and histopathologic features and immunologic variables in patients with severe chilblains. A study of the relationship to lupus erythematosus.

Chilblain lupus erythematosus (lupus pernio): clinical review of the Mayo Clinic experience and proposal of diagnostic criteria.

Below are some pictures of my feet with Chilblains sores. It is extremely painful and I wanted to cut my toes off. When the sores start to heal the pain is replaced with intense itching. Not fun. Chilblains Lupus is a rare symptom of Lupus and most Rheumatologist have never seen a case. Three Rheumatologist saw my feet in person and another three saw the pictures. None of them could identify the sores. Trental and Plaquenil are suggested as treatment for Chilblains Lupus in medical journal articles. Prednisone instantly healed my sores and Procardia helped keep them from returning.

Elevated Factor VIII in Liver Disease

I had lots of coagulation blood work drawn after being diagnosed with a DVT (deep vein thrombosis). One of those tests happened to be a Factor VIII test which ended up being elevated. The test was actually ordered on accident and the doctor could not explain anything about the test. I started research Factor VIII and decided most doctors really don’t know much about this coagulation factor.

Interestingly I discovered some articles that explain Factor VIII is actually increased in liver disease when most all the other clotting proteins and factors are reduced due to impaired liver function. This sounds like a contradiction but scientists have discovered that the cirrhotic liver in unable to produce adequate amounts of a protein called low density lipoprotein receptor-related protein (LRP). One of the functions of LRP is to control the amount of Factor VIII in the blood stream by metabolizing excess amounts of Factor VIII. Another contributing factor to the increase of Factor VIII in liver disease is the increased production of von Willebrand factor (vWF) in cirrhosis. Just as LRP helps regulate the levels of Factor VIII by destroying the extra Factor VIII, vWF helps preserve Factor VIII. Therefore extra vWF and low levels of LRP would lead to higher levels of Factor VIII.


Factor VIII expression in liver disease

There is yet one more reason for increased levels of Factor VIII in liver disease. The liver is composed of tons of special cells found only in the liver called sinusoidal endothelial cells. They are very permeable and allow the liver to directly interact with the blood and perform its life essential functions. In autoimmune hepatitis (AIH) and other autoimmune liver conditions, antibodies attack these sinusoidal endothelial cells and turn them into normal capillary endothelial cells found throughout the body, which are not permeable. These special sinusoidal endothelial cells have some other important properties. One of which is they do not make Factor VIII, which normal capillary endothelial cells do. Therefore Factor VIII increases when lots of sinusoidal endothelial cells are replaced with Factor VIII producing normal endothelial cells.

Capillarization of Hepatic Sinusoid by Liver Endothelial Cell-Reactive Autoantibodies in Patients with Cirrhosis and Chronic Hepatitis

Doctors Who Apologize

As illustrated in my last couple posts, autoimmune patients can be treated pretty poorly by medical professionals. The next couple articles show how a sincere apology from a doctor can actually heal both the doctor and the patient. As a patient who has been unfairly judged, I would like to think those doctors who have hurt me in the past realized what they did was wrong but just couldn’t bring themselves to apologize. Whether it was because of fear of admitting wrong and being sued or just plain pride, I’ll never know.


The Healing Power Of Apologies

“For moral reasons, physicians should be held to the same standards as others; that is apologies should be offered for “offenses,” not for predictable and expected mistakes.”


A Doctor's Apology Can Heal

"For me, the biggest piece of this conversation was her offering me forgiveness, you know … And it still sends a chill down my spine. Forgiveness goes both ways. It helps both sides."

“Nine years ago, no one ever blamed my mother's doctor for her death from a disease that ravaged her nonsmoker's lungs. But the memory of his apology and his earnest attempt to learn from what had happened still comforts me. There are times when "sorry" is the only thing to say. And sometimes, a doctor's apology helps everyone to heal.”


A Doctor's Apology, An Intensely Moving Experience

“The idea of a doctor apologizing to a patient was unheard of as few as 5 years ago. I first came upon the concept shortly after my misdiagnosis was resolved, through a piece run by CBS news. I promptly printed it off and mailed it to the doctors involved in my misdiagnosis. Then in 2007, CBS aired still another piece that talks about the physician's relief once the apology is made.”


Saying sorry is good for your health

“Physicians in particular may find it hard to apologize. Dr. Leape says this has to do with the culture of medicine. ‘First, our training leaves us with emotional baggage,” he says. “Physicians are selected for and socialized to expect perfect performance. A serious failure, such as an error that results in a major injury or death, can be so devastating to a doctor’s self-image that it may be overwhelming.’”

“In addition, he says, ‘Most physicians receive no training or support in offering apologies. They don’t know how to do it; they may feel ashamed and worry about being sued. So, it’s not a big surprise that apologies don’t always happen or are offered in the wrong way.’”

Doctors Feel Threatened By Invisible Illnesses

While this article deals with Fibromyalgia, it will ring true with anyone who is suffering from an autoimmune disease. Almost everyone with an autoimmune disease has had at least one rude encounter with a doctor, friend, or loved one questioning their pain.

Some Doctors, Friends, Relatives Dismiss Sickness

"I know in my case I just had the idea if you got sick you went to a doctor and they treated you," Matallana said. "I never, ever imagined someone would question my pain and my inability to function. That was to me almost as bad as enduring the physical symptoms.”

“The transformation of dynamic people into suffering wrecks, without any apparent cause, prompts confusion and questioning. Fibromyalgia patients say even friends, relatives and spouses find it hard to accept the reality of what has been called an invisible illness.”

“Dr. Patrick Wood, an assistant professor of medicine at Louisiana State University, decided to specialize in fibromyalgia … I don't think it makes me popular with my colleagues, but we're trained to be little gods and anything that challenges our god-like capacity we dismiss," Wood said. "(A doctor) could say, 'There's nothing to objectively demonstrate you're really sick. How do I know you're sick?' You have to trust the patient's report, which we're often not willing to do when it comes to pain."

“Some doctors dismiss patients with vague complaints of pain as hypochondriacs or malingerers, lazy people looking for an excuse not to work. It doesn't help matters that he and other doctors regularly encounter true malingerers, about whom they must make judgments to determine government disability payments.”

"Every doctor is faced with being a useful idiot, being a tool for somebody who wants to get out of work," said Lubin, who trained at Yale and Harvard. "I'd rather you fooled me once and then I could say, 'Shame on you,' rather than try to prevent my ego from ever being bruised by assuming everyone whoever asked me for a pill for their pain is a drug-seeker. We can't lose our humanity just because we're afraid of being hoodwinked."

ANCA Antibodies Found in Autoimmune Hepatitis

My positive CANCA test puzzled all the doctors so I started researching ANCA antibodies in light of my other symptoms and test results. I had just recently been diagnosed with Autoimmune Hepatitis (AIH) which is an autoimmune disease where the immune system attacks the liver. I found a couple articles written by German scientists who discovered that AIH patients can be positive for CANCA as well as PANCA. Even more interesting they discovered that the target antigen responsible for creating the CANCA test result was smooth muscle. Anti Smooth Muscle Antibody (ASMA) is the commonly known antibody associated with AIH. I also tested positive for ASMA so the positive CANCA could probably be explained by ASMA.

Actin is a target antigen of anti-neutrophil cytoplasmic antibodies (ANCA) in autoimmune hepatitis type-1.

Characterization of target antigens from anti-neutrophil cytoplasmic antibodies in autoimmune hepatitis type-I.

Anti-neutrophil cytoplasmic antibodies in type 1 and 2 autoimmune hepatitis.

High-titer antineutrophil cytoplasmic antibodies in type-1 autoimmune hepatitis.

What Do ANCA Antibodies Look Like?

When I tested positive for C-ANCA more than once by different labs, I definitely wanted to know what they looked like.

University of Birmingham

Testing positive for CANCA still did not reveal a diagnosis. In my search to learn more about ANCA antibodies I ran across a very interesting article. The article gives images of ANCA antibodies, but the neat thing is it gives a description of all the antibodies the patient tested positive and negative for. The images do look different depending on the combination of positive antibodies.

A review of immunofluorescent patterns associated with antineutrophil cytoplasmic antibodies (ANCA) and their differentiation from other antibodies

ANCA Antibody Specialty Lab - University of Iowa

Doctors tested my blood for ANCA antibodies (Anti-Neutrophil Cytoplasmic Antibodies) when I was showing symptoms of vasculitis (inflammation of the blood vessels). ANCA antibodies are usually positive in vasculitis and make 2 patterns if positive, C-ANCA or P-ANCA. P-ANCA antibodies have been found in other rheumatic diseases such as Lupus, but C-ANCA is highly specific for Wegener’s, a rare form of vasculitis. When my blood came back positive for C-ANCA and it was clear I did not have Wegener’s, doctors didn’t know what to make of this. The University of Iowa has researchers who specialize in the ANCA antibodies and is where unusual ANCA results are retested.

Dr. Targoff

University of Iowa Lab Description

University of Iowa Lab Requisition Form

Why Your Doctor Behaves The Way He Does When He Doesn’t Know What Is Wrong

Doctors and patients often don’t understand one another especially when a definite diagnosis seems impossible. Doctors and patients are frustrated by the same problem and end up at odds with one another instead of partners searching for the same solution. This is a very insightful website from a doctor about how doctors think and how you can influence your doctor to best help you. I wish I had read this article years earlier.

When Doctors Don't Know What's Wrong

Narrative Medicine

Too often women with autoimmune diseases end up being belittled by their physician or even blamed for making up their symptoms. A new field within medicine has emerged that will hopefully address the attitudes some doctors leave medical school with. As a female patient with autoimmune diseases that has been stereotyped more times than I would care to remember, this quote gave me hope that maybe someday doctors won’t resort to belittling their patients when they are actually frustrated with the patient's disease.

“Sick people need physicians who can understand their diseases, treat their medical problems, and accompany them through their illnesses. Despite medicine’s recent dazzling technological progress in diagnosing and treating illnesses, physicians sometimes lack the capacities to recognize the plights of their patients, to extend empathy toward those who suffer, and to join honestly and courageously with patients in their illnesses. A scientifically competent medicine alone cannot help a patient grapple with the loss of health or find meaning in suffering. Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings, and be moved to act on the patient’s behalf. This is narrative competence, that is, the competence that human beings use to absorb, interpret, and respond to stories. … it enables the physician to practice medicine with empathy, reflection, professionalism, and trustworthiness.” - Rita Charon



Narrative Medicine: A Model for Empathy, Reflection,Profession, and Trust

Professional Napper

I just wanted to let everyone know that I’ve been fighting a flare recently and I promise to write another article within a couple weeks. Thought I would leave you with the “professional napper” comic strip.

A Patient’s Description of a Good Doctor

Due to recent negative publicity about healthcare and doctors in general, BMJ asked and interesting question on their website. The theme issue was: What is a good doctor and how can we make one?

There were lots of insightful responses from doctors and patients. As a patient who has struggled to find a doctor to give meaningful and compassionate care, I too was curious as to what makes a good doctor. The best response came from a patient, Louise Ward. Below is her description of a good doctor.

“For several years I was registered with a wonderful GP in my home town. I never appreciated him until I moved away to study at the University. I went from being an empowered individual to a patient number. There was no recognition that I had existed before I joined my new practice - they never referred to any of my previous doctor's notes. It was upsetting to sit across the desk from the GP, give an account of what had happened, and then find out that the salient points had not been recorded in my notes. My suggestions for what might be happening were treated with, I felt, derision. After all, what would I know - I'm a mere patient!

It got to the point where I would only see my GP if I had a fair idea of what was going on. If I was concerned or worried I'd return home and see my "real" GP as a temporary resident.

So why was one GP wonderful and the other not? My "real" GP became my expert best friend. He took an interest in me as a person and not as a set of symptoms; he knew when to speak and, more importantly, when to shut up; my history was that MY history not his questions with his answers; I felt empowered and never felt bullied into taking a course of action that I didn't want to follow. At the end of the day he seemed to realize that I might be better placed to make suggestions as to what was going on.

My experiences lead me to make the following as a summary of a good consultation. The doctor asks questions; the patient gives answers; the doctor uses their knowledge and skills to help the patient make sense of their answers; the patient ultimately decides what they want to do with their doctor's support. My unhappiness arose when the doctor filled in her own answers.”


The bottom line is a good doctor is one who listens and respects the patient as a partner in healthcare.

What’s Wrong with Health Care in America

Dr. Fogoros, a cardiologist, has written a great article describing why the medical system behaves the way it does and more importantly how to best protect yourself from the system.

Here are some of the highlights from his article:

“The fundamental issue with American health care is the rationing problem. This is not a problem of whether to ration - we don't have any choice about that, since we simply can't buy all the health care that might be useful for every individual - but how to do it. And since rationing health care is politically unfeasible (despite the fact that we don't have any choice about it), there is only one answer to the "how" problem: we've got to ration covertly.

Covert rationing means rationing (that is, withholding care) without mentioning it to anybody. And the only way to accomplish that is to have the doctors do it, quietly and whenever possible, subconsciously, at the bedside. Covert rationing requires that doctors, when making decisions about what tests to order and what care to give, must take into account something other than what's best for the individual patient sitting before them. That "something other" might be any of a multitude of factors, such as the regulations promulgated by the feds, personal financial incentives promulgated by health plans, interpreting scientific data with a certain slanted viewpoint, or peer pressure to behave in a certain way for the good of the profession or the specialty or the practice (i.e., protecting turf.) The point being that covert rationing - which, like it or not our society has fully embraced - requires, as a fundamental tenet, the systematic destruction of the doctor-patient relationship.

[This destruction of the doctor-patient relationship] explains all the seemingly bizarre behavior we see taking place every day in the American health care system. While you may be lucky enough to find a doctor who is adept at "gaming" the system, or who will take personal risks to get you what you need, you certainly can't count on that. Especially when you are dealing with a potentially life threatening disorder. You can no longer assume that whatever needs to be done will be done. You can't be passive. You've got to take responsibility for and control over your own health care.”

For the full article see:

Why the Health Care System Behaves the Way It Does

Managing Your Doctor

Managing Your Health Plan

Managing Your Own Health

More Research Labs for Antibodies

I also had blood sent to a research lab in Oklahoma. I had some confusing lab results, which sent doctors on a search for determining my specific antibody. I had a positive C-ANCA antibody test, which is supposed to by 90% specific for Wegener’s, but from my symptoms I obviously did not have Wegener’s. Since I had symptoms of myositis and a cousin who has Dermatomyositis, my blood was sent to a research lab that specialized in myositis antibodies at Oklahoma. Oklahoma also has a research lab that deals with Lupus and other autoimmune disease related antibodies. These labs are capable of multiple types of tests to confirm antibody specificity. However, even with all their technology they unfortunately were still unable to identify my antibody.

Oklahoma research blood test information and requisition forms:

OMRF Clinical Immunology Laboratory

OMRF Myositis Profile

APS Antibodies Found in Spinal Fluid

It is a relatively new concept to test patient’s spinal fluid for antibodies. I displayed multiple symptoms of APS, however I did not have a single positive blood test result. Because I had been having daily headaches for over six months and I was on immune suppressant drugs, the doctors decided to order a spinal tap to rule out an infection. Since spinal fluid would be available, they decided to send some of the spinal fluid off to the APS lab in Indiana as well as some of my blood. My spinal fluid ended up being positive for anti cardiolipin. However, my blood had been tested for that antibody for over 13 years by multiple labs and my blood was never positive. This was supportive proof for the theory that the blood brain barrier can make antibodies separate from the blood stream.

Research article from PubMed