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| Lupus filled my flat abs with fluid. |
(Oct. 26, 2012) Lupus has become my own personal terrorist. He hides out in the
remotest
regions of my body, coldly masterminding his next crippling,
disfiguring, painful or humiliating assault. He relishes with a jihadist's fervor
his fantasies about the secret havoc he can wreak on my internal
organs. But I bet he gets the biggest kick out of what he is doing to
my appearance. Until recently, I had a well-toned, skinny body. Today, my abdomen is a disgusting, big bag of fluid. I was once
told that I looked like "a young Lauren Bacall." But now, a better comparison would be to
W.C. Fields.
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| Mr. Fields and I share splotchy red skin and a burgeoning snout. |
I will summarize the status of current drug trials below, but to put it succinctly: It's not looking good, at least in the near-term.
THEY HAVE THEIR TRIALS -- I HAVE MINE
I have
developed several dismaying medical conditions since my initiation into
lupus in 2010. Each time I do some research, I find that lupus is a
possible or a likely cause.
Before I launch into my litany of new symptoms, I want to make it clear that I don't feel sorry for myself. I do spend days in bed and weeks in discomfort, but I'm grateful not to have something worse than lupus, and there are certainly many diseases that are much worse. I am so thankful that I have a home I love, an ever-patient and supportive partner, and the financial resources to meet my needs. I am still able to do rewarding work -- some of the most rewarding of my life. I don't merit any sympathy. This blog post is purely informational.
I currently have burning blisters under my eyes, severely flushed facial skin and an oozing, bright red rash on my lips and around my mouth.
(I wrote last year that a survey by the Autoimmune Diseases Association reported over 45 percent of patients with autoimmune diseases have been labeled by doctors as "chronic complainers." Now that phrase has adorably popped up in my own medical file. What does she think I'm there for -- to exchange recipes? A sympathetic rheumatologist, Graham Hughes, MD., counters that "Patients with lupus often get passed from pillar to post.” )
Ironically, a recent survey conducted by GfK Roper North America found that more than 90 percent of SLE patients experience a communication gap with their family and with their care team, and downplay their symptoms. To make matters more complicated and less believable, the study -- which was cited in The Rheumatologist journal -- was funded by GlaxoSmithKline, which is peddling the only new lupus drug approved by the FDA in 50 years.
Those who have seen my earlier posts may remember that my first encounter with lupus was when I developed a florid under-eye rash while my father was dying. For the next three months, I tried every natural remedy I could think of before turning to the Medical Industrial Complex for help in finding a diagnosis and treatment. In addition to the rash, I had dramatically elevated blood pressure and heart rate, plus moderate hair loss.
Six months and several doctors later, the symptoms remained unabated, and no conclusive diagnosis had emerged. Some
of the specialists said I had systemic lupus. Others
diagnosed me with cutaneous lupus. One characterized it as some sort of "mysterious
hybrid" of various autoimmune diseases, and another theorized that I had "multiple connective-tissue disorders."
The lab work indicated obvious autoimmune abnormalities (anti-nuclear antibodies). The ever-increasing presence of anti-chromatin antibodies buttressed the SLE diagnosis. But I never did get a credible, confident explanation of precisely what was wrong with me. I assume this is common.
My impression is that the whole autoimmune phenomenon is very poorly understood, and I believe the medical establishment would do patients a great service by saying so.
GETTING THE GRANDEUR I DESERVE -- IT'S ABOUT TIME!
I was invited to be the "exhibit" at the University Medical Center's Grand Rounds one morning last year, when my under-eye rash was in full flower, and the only advice I got from that esteemed group of specialists was to get a spiral CT scan to check for lung cancer. Thanks, gentlemen! My lungs were fine.
Shortly
thereafter, and purely by circumstance, I purchased a better quality
probiotic than I had been using (it was half price), and my nightmarish rash, which had blazed constantly for nine months,
vanished within 36 hours.
This was no placebo effect. I wasn't even thinking about lupus when I bought the probiotics. I have been taking a simpler version for about 25 years. In Europe and Asia, they are staples of wellness.
I have stressed that I have no proof that probiotics were responsible for the dramatic effect on my condition, but the circumstantial evidence is pretty impressive. I continue to have faith in them for overall health maintenance, even though in some ways my symptoms have worsened.
After my unwitting discovery that probiotics seemed to help me, I learned that there is solid scientific evidence to support their use for lupus (http://kronstantinople.blogspot.com/2011/07/lupus-rash-quest-for-truth.html). Foods such as yogurt, kefir, unpasteurized sauerkraut, kimchee and kombucha are also beneficial. Check the label to ensure that they contain live cultures.
DOCTOR WHO? DOCTOR ME
After I wasted a whole lot of time seeing doctors, I went back to Plan A: doing the best I could to take care of myself.
Several doctors had urged me to take an antimalarial drug, Plaquenil, which
might offer some protection to my internal organs whenever my "mystery"
autoimmune disease flared. I was told, "Your kidneys could fail at any time, without warning." Nevertheless, I resisted taking medicine for well over a year, with the
hope that my vegan diet, exercise regimen, nutritional supplements and
probiotics would provide an adequate defense.
Ultimately, I got scared. I began having what appeared to be neurological symptoms. Reluctantly, I began taking 600 mg of Plaquenil per day.
The drug has not mitigated any of the symptoms, but -- as one doctor predicted -- it does seem to help me
feel somewhat better overall. I am surprised that I have not had any side-effects. I usually have them all!
LUPUS: THE BLUSHING TERRORIST
Every few months, I fall prey to some new disorder or condition that can be traced to lupus.
Over the past couple of years, my abdomen has gradually become alarmingly distended. I look quite pregnant, despite my daily regimen of jogging and weight training and my calorie-conscious vegan diet.
I said to my primary care doctor, "This can't be fat, can it?" She assured me that it wasn't, but she was concerned that it might be ovarian cancer, which can cause bloating. Testing determined that I had no gynecological problems, and the matter was dropped. A colonoscopy also revealed no pertinent problems.
It is often said of steroids, "The cure is worse than the disease." I don't want to be subjected to them. I would rather face the disease on my own than to ingest such a virulent product.
I realize that for millions of people, steroids provide priceless relief for a number of conditions, with tolerable ill effects. Even so, I'm scared of them.
Maybe I'll just hang around, so to speak, and let nature take its course. If you want to pat my belly and say, "A baby at your age -- that is so bizarre!" feel free. I'll take all the pats I can get.
Before I launch into my litany of new symptoms, I want to make it clear that I don't feel sorry for myself. I do spend days in bed and weeks in discomfort, but I'm grateful not to have something worse than lupus, and there are certainly many diseases that are much worse. I am so thankful that I have a home I love, an ever-patient and supportive partner, and the financial resources to meet my needs. I am still able to do rewarding work -- some of the most rewarding of my life. I don't merit any sympathy. This blog post is purely informational.
I currently have burning blisters under my eyes, severely flushed facial skin and an oozing, bright red rash on my lips and around my mouth.
(I wrote last year that a survey by the Autoimmune Diseases Association reported over 45 percent of patients with autoimmune diseases have been labeled by doctors as "chronic complainers." Now that phrase has adorably popped up in my own medical file. What does she think I'm there for -- to exchange recipes? A sympathetic rheumatologist, Graham Hughes, MD., counters that "Patients with lupus often get passed from pillar to post.” )
Ironically, a recent survey conducted by GfK Roper North America found that more than 90 percent of SLE patients experience a communication gap with their family and with their care team, and downplay their symptoms. To make matters more complicated and less believable, the study -- which was cited in The Rheumatologist journal -- was funded by GlaxoSmithKline, which is peddling the only new lupus drug approved by the FDA in 50 years.
Those who have seen my earlier posts may remember that my first encounter with lupus was when I developed a florid under-eye rash while my father was dying. For the next three months, I tried every natural remedy I could think of before turning to the Medical Industrial Complex for help in finding a diagnosis and treatment. In addition to the rash, I had dramatically elevated blood pressure and heart rate, plus moderate hair loss.
 |
| "Don't worry, it's not contagious," I assured people. |
The lab work indicated obvious autoimmune abnormalities (anti-nuclear antibodies). The ever-increasing presence of anti-chromatin antibodies buttressed the SLE diagnosis. But I never did get a credible, confident explanation of precisely what was wrong with me. I assume this is common.
My impression is that the whole autoimmune phenomenon is very poorly understood, and I believe the medical establishment would do patients a great service by saying so.
GETTING THE GRANDEUR I DESERVE -- IT'S ABOUT TIME!
I was invited to be the "exhibit" at the University Medical Center's Grand Rounds one morning last year, when my under-eye rash was in full flower, and the only advice I got from that esteemed group of specialists was to get a spiral CT scan to check for lung cancer. Thanks, gentlemen! My lungs were fine.
 |
| Being the focus of Grand Rounds is thrilling, even if it's not very helpful. |
This was no placebo effect. I wasn't even thinking about lupus when I bought the probiotics. I have been taking a simpler version for about 25 years. In Europe and Asia, they are staples of wellness.
I have stressed that I have no proof that probiotics were responsible for the dramatic effect on my condition, but the circumstantial evidence is pretty impressive. I continue to have faith in them for overall health maintenance, even though in some ways my symptoms have worsened.
After my unwitting discovery that probiotics seemed to help me, I learned that there is solid scientific evidence to support their use for lupus (http://kronstantinople.blogspot.com/2011/07/lupus-rash-quest-for-truth.html). Foods such as yogurt, kefir, unpasteurized sauerkraut, kimchee and kombucha are also beneficial. Check the label to ensure that they contain live cultures.
After I wasted a whole lot of time seeing doctors, I went back to Plan A: doing the best I could to take care of myself.
Ultimately, I got scared. I began having what appeared to be neurological symptoms. Reluctantly, I began taking 600 mg of Plaquenil per day.
 |
| Why do I have to be such a puzzle? |
LUPUS: THE BLUSHING TERRORIST
Every few months, I fall prey to some new disorder or condition that can be traced to lupus.
Over the past couple of years, my abdomen has gradually become alarmingly distended. I look quite pregnant, despite my daily regimen of jogging and weight training and my calorie-conscious vegan diet.
I said to my primary care doctor, "This can't be fat, can it?" She assured me that it wasn't, but she was concerned that it might be ovarian cancer, which can cause bloating. Testing determined that I had no gynecological problems, and the matter was dropped. A colonoscopy also revealed no pertinent problems.
 |
| The former me, and the current me. |
Still, my tummy grew. My digestion has been affected, and so has my posture. I am nauseated much of the time.
After doing yet more research, I theorized that I might have ascities, a buildup of fluid in the peritoneal cavity. No doctor ever mentioned this possibility, even though it should have been an obvious red flag. The liver and kidney abnormalities that are common in lupus patients can cause this condition, and are in fact sometimes the first symptom of kidney disease in lupus patients. The essential first step is simply to check for protein in the urine. Despite the high incidence of kidney illness -- nephritis -- in lupus patients -- and the real danger of kidney failure and death -- my doctors were usually only doing blood work.
HARD TO STOMACH
The ascites fluid can be drained temporarily, using a syringe and/or diuretics, but treating the underlying organ malfunction
is the greater problem. It generally involves taking steroid drugs, which I will almost certainly reject, just as I rejected steroid treatments for my skin. After doing yet more research, I theorized that I might have ascities, a buildup of fluid in the peritoneal cavity. No doctor ever mentioned this possibility, even though it should have been an obvious red flag. The liver and kidney abnormalities that are common in lupus patients can cause this condition, and are in fact sometimes the first symptom of kidney disease in lupus patients. The essential first step is simply to check for protein in the urine. Despite the high incidence of kidney illness -- nephritis -- in lupus patients -- and the real danger of kidney failure and death -- my doctors were usually only doing blood work.
HARD TO STOMACH
It is often said of steroids, "The cure is worse than the disease." I don't want to be subjected to them. I would rather face the disease on my own than to ingest such a virulent product.
I realize that for millions of people, steroids provide priceless relief for a number of conditions, with tolerable ill effects. Even so, I'm scared of them.
LUPUS IS A NOSY BASTARD
Lupus, in concert with my pre-existing flushing disorder, is making my nose get bigger. I don't mind if you laugh -- it is kind of funny, except when it's breaking my heart.
My nose is taking over my face. I never paid any attention to it before -- it was ordinary, no problem -- but now I can feel it, protruding and hanging. I can look down and see a graceless heap of flesh.
The repeated surges of blood to the surface of my skin are creating a new infrastructure of capillaries, sweat glands, and sebaceous glands, and my nose has been transformed into a whole new appendage: A big honker! It looks tacked on, like a Halloween disguise. The skin is shiny, and both water and oil pop visibly out of the pores.This condition, called rhinophyma, is not uncommon among those with flushing disorders, although it primarily affects older men.
THE BETTER TO SMELL YOU WITH
I have tried two expensive prescribed ointments -- Finacea and metro gel -- as well as benzoyl peroxide and tretinoin, to see if I could halt this process. The latter two may have helped a little bit -- I'm not sure. My doctor said laser treatments might improve my appearance, but I haven't pursued that yet. I want to wait and see if it will stop growing, or maybe even spontaneously deflate (couldn't that be possible? stranger things have happened) to its previous size.
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| I hope mine will stop growing before it gets this bad. |
(I'm afraid I'm developing erectile tissue in a very bizarre location. Maybe I'll launch a beauty pageant for people with this affliction, and I'll have myself declared the first "Miss Tumescence.")
Even the cartilage is pushing forward to accommodate this bulbous structure, and my "new nose" has burst through the now-inadequate outer layer of skin three or four times, leaving it in shreds. The bridge of my nose aches. Could it be growing pains? As I lie there -- gripped by insomnia, as usual -- I can feel my facial features being pulled by the weight of my nose into unfamiliar and unattractive contortions. I try to contrive a pleasant, warm, receptive visage, but I can't do it.
MENACING SCOWL FREAKS OUT THE MASSES
My expression while I'm in bed, in the dark, doesn't matter all that much, of course, but the weight of my larger nose has forced everything into a sort of grimace during the day as well: The corners of my mouth are pulled down, and frown lines are developing on my forehead and between my eyebrows.
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| My face looks like I'm pissed or I smell something stinky. This photo of the late transvestite actress Divine looks extreme, but it's really not much of an exaggeration. My hair isn't as bad, though, and my boobs aren't as boobie. |
I thought I'd risen above my
youthful vanity, but I admit that this nasal disfigurement hurts me. I never was
beautiful, but I wish I could keep looking like myself. I'm afraid that I have come to appear comical, pathetic, or just plain hideous.
I'm surprised at how readily I'm getting adjusted to feeling fundamentally unattractive. It's quite an interesting and instructive experience. I feel that I'm growing a bit as a person, so in a perverse way, it's worthwhile.
KISSABLE ME
As if the eruption of my nose weren't enough, my lupus terrorist has ignited an ugly, burning condition all over my mouth. I believe it is a form of chelitis, even though I have minimized the characteristic chapping by keeping my lips thoroughly moisturized. Chelitis can be caused by the anemia (both the pernicious variety and the iron deficiency) that are commonly associated with lupus.
Ever since I got lupus, my lips have been bright red, tight, shiny and
stinging. They're too tender to exfoliate -- which I had been doing in the shower with a washcloth since high school -- so I never wear lipstick anymore -- just Vaseline.
But when the chelitis flares, as it has recently, the redness gradually extends outside the barriers of my lips: upward, downward and outward.
I have tried Vitamin E, zinc oxide, antibiotic cream, antifungal cream, anti-inflammatory cream and hydrocortisone cream. Nothing provided any relief.
I look like a hyena who has just looked up from gorging on a bloody carcass.
Chelitis goes through a charming
array of stages -- cracking and oozing, creeping up from your lips to under the nostrils, and
ultimately (unless you take proactive measures) it makes way for staph
infections, or the fungal overgrowth, candida albicans, to make an even
bigger mess, especially in the corners of your mouth (angular chelitis).
OTC miconazole has helped me to avoid this very uncomfortable
condition. The chelitis is bad enough by itself.
I'm surprised at how readily I'm getting adjusted to feeling fundamentally unattractive. It's quite an interesting and instructive experience. I feel that I'm growing a bit as a person, so in a perverse way, it's worthwhile.
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| In the early months, I fantasized about this solution to my off-putting face. |
As if the eruption of my nose weren't enough, my lupus terrorist has ignited an ugly, burning condition all over my mouth. I believe it is a form of chelitis, even though I have minimized the characteristic chapping by keeping my lips thoroughly moisturized. Chelitis can be caused by the anemia (both the pernicious variety and the iron deficiency) that are commonly associated with lupus.
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| My outbreak has already lasted nine weeks and has been much more red and cracked than this picture. Luckily, I was in no mood to kiss or be kissed! |
But when the chelitis flares, as it has recently, the redness gradually extends outside the barriers of my lips: upward, downward and outward.
I have tried Vitamin E, zinc oxide, antibiotic cream, antifungal cream, anti-inflammatory cream and hydrocortisone cream. Nothing provided any relief.
I look like a hyena who has just looked up from gorging on a bloody carcass.
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| He doesn't seem to mind the gory appearance. I do. |
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| When you yawn, or floss your teeth, the skin tears open. |
I NEVER WANTED TO BE A WHITE GIRL ANYWAY
My original under-eye rash has not returned full-force, but it is right beneath the skin, and it floods to the surface briefly, several times a day. I am somewhat flushed all the time.
Ironically, I have always longed for what the British used to call "high colour." To me, a radiant, pink glow represented health and vigor -- striding through the forested countryside in tweedy woolens. I loved a good "flush," so I piled on the blush. Then I discovered alcohol, which gave me rosy cheeks and sparkly eyes.
But autoimmunity has caused me to get a splotchy red and/or purple flush when I eat warm food, dry my
hair, perform my yoga stretches, have a shower, engage in a stressful or
animated conversation, jog vigorously in warm weather, do weight
training, have a nap, or when when I feel claustrophobic or overwhelmed,
etc. My original under-eye rash has not returned full-force, but it is right beneath the skin, and it floods to the surface briefly, several times a day. I am somewhat flushed all the time.
Ironically, I have always longed for what the British used to call "high colour." To me, a radiant, pink glow represented health and vigor -- striding through the forested countryside in tweedy woolens. I loved a good "flush," so I piled on the blush. Then I discovered alcohol, which gave me rosy cheeks and sparkly eyes.
I am a hot flash waiting to happen -- and I never have to wait very long.
PINK EYES AND BUTTERFLIES
The "butterfly" malar formation that is characteristic of lupus often shows through the flush that envelops my whole face. These episodes can last for hours.
When I get up in the morning, my face is vivid pink, and for all I know, it's been discolored all night. It is not pretty. It makes me look agitated and ruddy. It is my insides reminding my outside that I am fundamentally sick.
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| I always wanted rosy cheeks, until I got them -- in disease form. |
This discoloration is often accompanied by a prickling, burning, crawling sensation, especially around my eyes and upper cheeks. It feels as if insects are all over my face. The itching becomes unbearable. I get a cold cloth and press it around my eyes as the skin becomes increasingly purple. Sometimes the cold water and light friction from the terry cloth give me enough relief that I can return to what I was doing. Other times, all I can do is take a sedative and go to bed.
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| Years of flushing thicken the skin. |
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| I use a turkey baster and salt water. It provides some (comic) relief. |
NOW, IT'S MESSING WITH MY MIND
Lupus has affected me in ways that seem profound and -- for me, anyway -- quite sad. My hands quiver. It's strange, because I've always been moved to assist or comfort anyone else whose hands trembled. I felt so sorry for them! But in my own case, I just feel frustrated and slightly embarrassed.
I am so unsteady that I look like someone in her nineties when I make my way down the stairs. I have fallen down for no apparent reason several times and have sustained long-lasting injuries. My vision has worsened dramatically. My once-confident, good-looking handwriting is illegible. My typing is such a mess that I am amazed I'm actually able to produce a blog. I have developed a debilitating stutter.
It was because of these symptoms that I finally began taking Plaquenil. As I mentioned earlier, it hasn't provided any relief from them, but I feel that it has a slight overall benefit.
At least I can still jog, much more slowly than before, and do my weight training and stretching. If I couldn't, I don't think I would want to go on.
Even so, when I finish a great workout and then look in the mirror -- still hoping stupidly to see a healthy, radiant woman -- I face the reflection of someone who appears fundamentally sick, slumped, bleary-eyed and miserable.
My short-term memory has deteriorated in an alarming way. I don't know if this is an effect of lupus or not. There are several other possible explanations, including depression (ongoing) and alcoholism (resolved long ago). Maybe they've all joined forces to chew my brain to pieces.
I realized just a few minutes ago that I had already written most of this post -- I don't remember when. Was it days ago? Weeks? It was all taken care of -- even the pictures! Now I am sitting here cutting and pasting. Some of the writing in the first post was better; all of it seems pretty mediocre to me. Sorry -- I'm kind of grieving at how my intellect is dissolving. I was fond of it.
DRUG RESEARCH SEEMS RATHER ANEMIC
The article I referenced earlier, in the October issue Journal of Arthritis and Rheumatism, was reporting on a clinical trial of belimumab (brand named Benlysta). It is unclear what motivated the trial, since the FDA approved the drug last year, amid much fanfare (as usual). Big Pharma hadn't come up with anything new in 50 years to treat lupus. Given that there are an estimated 5 million people suffering from lupus around the world, executives declared that they were expecting billions in profits.
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| Drug companies were salivating at the prospect of huge profits. |
Benlysta is being fostered by GlaxoSmithKline, which bought -- "at bargain basement prices" -- Human Genome Sciences, the drug's developer, after that firm netted only $50 million in sales the first year, a huge disappointment.
Glaxo has been trying to spur momentum for the drug. Perhaps that's why they have conducted another clinical trial, although this one doesn't make Benlysta sound any more promising than the previous ones.
Their newly released data make only a weak claim that belimumab is safe. To make things even less interesting: Not once in the journal article is the word "effective" used.
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| Ah, the venerable FDA, ensuring safe, effective drugs for a century! |
According to Glaxo's own web site: "It is not known if BENLYSTA is safe and effective in people with severe active lupus nephritis or severe active central nervous system lupus, and it has not been studied in combination with other biologics or intravenous cyclophosphamide. BENLYSTA can cause serious side effects. Some of these side effects may cause death."
Yet another hopeful corporation, Anthera Pharmaceuticals, is working on its own solution, blisibimod -- which is, as you probably know -- a selective peptibody antagonist of the BAFF cytokine. Excellent! John McCamant, editor of the Medical Technology Stock Letter, regards it as a more promising treatment.
Market research firm GlobalData estimates the global market for lupus therapeutics will grow nearly 25 percent annually through 2018, bolstered by the approval of Benlysta and the anticipated approval of biologic drugs from Immunomedics, Eli Lilly and Merck. Earlier-stage anti-interferon alpha therapies are under development by Genentech, Medimmune, Argos Therapeutics and GlaxoSmithKline.
"The overall SLE market will grow dramatically, from around $691 million in 2011 to $3.9 billion in 2021. The SLE market will see the entry of several different B-cell inhibitors -- including Eli Lilly’s tabalumab, UCB/Immunomedics’ epratuzumab and Anthera Pharmaceuticals’ blisibimod -- that will compete for market share and could ultimately occupy specific niches in SLE treatment, based on factors that include route of administration, onset of action and efficacy, according to an Oct. 25, 2012 article in The PharmaLetter. Benlysta will dominate the market, the publication predicts.
FOUNDATION'S INNOVATIVE EFFORTS OFFER HOPE
On Oct. 16, the Lupus Research Institute announced the first $1 million research grants given to lupus investigators by a private research organization.
The two Distinguished Innovator recipients are Drs. Ann Marshak-Rothstein at University of Massachusetts Medical School and Greg Barton at University of California, Berkeley.
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| Dr. Ann Marshak-Rothstein will study key triggers. |
 |
This illustrates how dendritic cells are active locally along with T cells in the autoimmune disease lupus
This shows how dendritic cells are active with T cells in lupus.Read more at: http://phys.org/news/2010-12-immune-cell-unexpected-role-autoimmune.html#jCp
This illustrates how dendritic cells are active locally along with T cells in the autoimmune disease lupus
Read more at: http://phys.org/news/2010-12-immune-cell-unexpected-role-autoimmune.html#jCp |
From 2007 to 2008, LRI-generated lupus research doubled at the NIH, from $30 to $60 million. Since then, the LRI investment has nearly tripled, reaching over $100 million from the NIH.
Three lupus research organizations have joined forces to create a new award to fund research on the causes and treatments of research. The first-ever Lupus Insight Prize will provide $200,000 to one researcher to help fund a project dedicated to furthering understanding of the genetic, environmental, molecular, immunologic, or cellular aspects of lupus or its treatment. The winner will be announced in 2013.
So basic research is leading to some promising theories, and the drug companies, who will get to use all this private and taxpayer-funded research, will continue to be one of the most profitable sectors in the economy.
In the meantime, onward lupus soldiers!
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| Let's kill the bastard. |
THE MAJOR POST IN MY LUPUS SERIES IS "Lupus: A Rash Quest for the Truth." http://kronstantinople.blogspot.com/2011/07/lupus-rash-quest-for-truth.html
PROMISING LUPUS REMEDY WORMS ITS WAY INTO SCIENTSTS' HEARTS
Yesterday morning, the BBC reported that parasitic worms have captured the enthusiasm of scientists who are seeking a cure for multiple sclerosis. The worms appear to halt the immune system's attack on itself, which is known as autoimmunity. It seemed to me that this should work equally well for lupus. My research indicates that it might.
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| Ascariasis, the disease caused by the roundworm, is the most common worm infection in humans. These large, long worms are not the variety that is considered most promising for autoimmune therapy (thank goodness!). |
This
new research lends credence to my inadvertent discovery in February
that probiotics seemed to have a powerful effect on my lupus symptoms.
Studies around the globe are suggesting that the worms, "which appear to have a probiotic effect," can
reverse autoimmunity, nudging our immune systems back to their intended
function of protecting rather than attacking us. This has implications
for a wide array of diseases, including lupus.
Parasitic worms are known as helminths. We may soon be regarding them
as symbiotic rather than parasitic organisms as their beneficial
effects become more widely accepted.
A PROMISING NEW APPROACH
Just as leeches have regained their role as a standard medical
treatment, parasitic worms -- or a pharmaceutical agent that mimics
their effects -- may soon become a key part of immunology's
armamentarium.
Although the research is being conducted at some of the top universities in the world, and papers presenting exciting preliminary data are being published in prestigious journals, it seems premature for the general public to be embracing helminth therapy. Nevertheless, there are several sites on the web that provide the means to "self-administer" the therapy.
Autoimmune diseases cause so much misery, and conventional medicine has so little to offer, it is not surprising that many people are willing to try a treatment that is, for the time being at least, outside the mainstream.
Although the research is being conducted at some of the top universities in the world, and papers presenting exciting preliminary data are being published in prestigious journals, it seems premature for the general public to be embracing helminth therapy. Nevertheless, there are several sites on the web that provide the means to "self-administer" the therapy.
Autoimmune diseases cause so much misery, and conventional medicine has so little to offer, it is not surprising that many people are willing to try a treatment that is, for the time being at least, outside the mainstream.
"A gathering body
of evidence is pointing towards the idea that some intestinal worms may
actually be 'probiotics' and directly modulate the immune system," according to WormTherapy Inc.
Another site that sells worm eggs for the treatment of autoimmune
disorders, Autoimmune Therapies Inc., refers to helminthic worms as "nature's most powerful probiotic."
Founder Jasper Lawrence says his firm was the first to provide therapeutic helminths for sale.
He got into the business after going to Cameroon in January of 2006 and
infecting himself with hookworm. He experienced a complete remission of
his asthma
and severe seasonal allergies, he writes.
An exhaustively footnoted WormTherapy paper claims that by invading the intestinal mucosa, the worms are
able to micro-dose immune cells as they encounter them, genetically modifying lactobacillus lactis, a common probiotic strain.
MODULATING YOUR IMMUNE SYSTEM
Worms that modulate their host's immune system in order to stay alive offer hope to those who suffer from Crohn's and MS, psoriasis, Grave's disease,
rheumatoid arthritis, lupus, scleroderma, Type I diabetes and many other diseases.
For most of human history, homo sapiens have
been infected with helminths, worm-like organisms that live in and feed
off of their hosts. Some of them can cause anemia, malabsorption of
nutrients, pain and disease. Others apparently are well tolerated.
An "unholy trinity" of parasitic worms still resides in about half the
world's population. Large roundworm, hookworm and whipworm flourish in
undeveloped parts of the world, where there is a lack of sanitation.
Infected feces taint food, drinking water and crops.
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| Through the skin and into the blood vessels, the larvae eventually reach the small intestine, where they suck blood out of the intestinal walls. They are about a quarter-inch long. |
It has only been in recent years that researchers in several countries
have begun exploring the benefits provided by these creatures. These
scientists are exponents of the "hygiene hypothesis," which has emerged
from work in multiple scientific disciplines.
OUR FORMER FRIENDS MAKE A RETURN APPEARANCE
OUR FORMER FRIENDS MAKE A RETURN APPEARANCE
The hygiene hypothesis is the theory
that the organisms we consider harmful today were
protecting our immune systems before modern life and modern medicine
entered the picture. We have become "too clean," some scientists say,
and are not exposed to a broad range of micro-organisms that would
stimulate our immune systems to function normally.
The distribution of "worms vs. wealth" has become known as the Wealth Gradient, and it correlates the rise of affluence with the emergence of autoimmunity.
The distribution of "worms vs. wealth" has become known as the Wealth Gradient, and it correlates the rise of affluence with the emergence of autoimmunity.
Well into the last century, autoimmune diseases such as lupus, multiple sclerosis and Crohn’s were almost unheard of. Even asthma
and allergies were extremely rare. Having baths was for special
occasions, and people had much greater exposure to animal dander and
animal feces.
Advocates of helminthic therapy suggest that exposure to those organisms created a healthy immune system.
MODERNITY CONFUSED OUR IMMUNE SYSTEMS
Advocates of helminthic therapy suggest that exposure to those organisms created a healthy immune system.
MODERNITY CONFUSED OUR IMMUNE SYSTEMS
Numerous modern ailments, they say, are the direct result of our stunted and rather confused immune response. Today, almost half the people in the developed world suffer from autoimmune disorders and allergic diseases. In "poor countries," they are almost unheard of.
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| The whipworm, which sets up shop in the large intestine may be "the secret to curing Crohn's." Severe cases [see photo inset] can cause the walls of the rectum to emerge from the anus. |
The
authors of a study published in Science magazine in April of 2011 suggest
that there may be a link between the rising rates of metabolic syndrome in the
developed worlds and the largely successful efforts of Westerners to eliminate
intestinal parasites.
 |
| A tapeworm can become as long as 20 feet. |
In June, the Wall Street Journal
reported that millions of people who suffer from autoimmune diseases
may some day benefit from current research on parasitic worms.
WORMS OFFER HOPE FOR THOSE WITH MS
Multiple sclerosis, an autoimmune condition that affects 2.5 million people worldwide, has been a major focus of the preliminary studies. Pig whipworms are being administered by researchers in the U.S. and Denmark; in Britain, hookworms are being used. All of these studies have shown that the worms create an impressive anti-inflammatory response.
"These
worms have a paradoxical effect on the host," according to a 2008 article in the New York Times. "Rather than induce
inflammation, which is the body's typical response to invasion, the intruders
calm the host immune system. They force a peace, scientists think, to avoid
eviction and keep the host -- their home and food source -- as healthy as
possible."
The study subjects drank 2,500 of the eggs mixed into a sports drink. The eggs hatched in the patients' intestines and were killed by the immune system within about a week, after having had the desired effect. Longer-term recipients of 10 worms report an easing of mild gut symptoms as host and parasite seemingly reach a form of biological agreement.
A 'PEACE PACT' IN YOUR BOWELS
"It is at this point that we hypothesize that immune regulation may be taking place," researcher Jorge Correale says.
WORMS OFFER HOPE FOR THOSE WITH MS
Multiple sclerosis, an autoimmune condition that affects 2.5 million people worldwide, has been a major focus of the preliminary studies. Pig whipworms are being administered by researchers in the U.S. and Denmark; in Britain, hookworms are being used. All of these studies have shown that the worms create an impressive anti-inflammatory response.
 |
| The worms modulate the immune system, which resides in the colon. |
The study subjects drank 2,500 of the eggs mixed into a sports drink. The eggs hatched in the patients' intestines and were killed by the immune system within about a week, after having had the desired effect. Longer-term recipients of 10 worms report an easing of mild gut symptoms as host and parasite seemingly reach a form of biological agreement.
A 'PEACE PACT' IN YOUR BOWELS
"It is at this point that we hypothesize that immune regulation may be taking place," researcher Jorge Correale says.
This immune regulation is at the center of hope that "worm therapy"
can be developed into a viable treatment for lupus and other diseases.
 |
| Lupus causes our immune systems to attack multiple tissues and organs. It is said to be the only autoimmune disease that can be fatal. |
If
these trials prove successful, treatment with
parasitic worms could provide a "simple, cheap,
natural and controllable treatment" for MS, according to the Wall Street
Journal. MS is very much like lupus, except that it has a narrower
focus. Like lupus, it is the product of an overactive immune system,
which -- in this case -- attacks nerve fibers in the brain and spinal cord.
Interest in helminthic therapy surged in 2007 with
the publication of a study in Argentina by physicians Jorge Correale and
Mauricio Farez. It showed that the progression of multiple sclerosis was much
slower in patients who carried parasitic worms in their intestines than in
those who didn't.
ENCOURAGING RESULTS IN GLOBAL STUDIES
ENCOURAGING RESULTS IN GLOBAL STUDIES
Although the FDA hasn't approved this treatment, it has had
considerable success around the world, according to a report by Fox News
earlier this year. The U.S. National Institutes
of Health is funding research on the effects of the whipworm on
inflammatory bowel disease and other autoimmune afflictions.
The New York Times has covered the work of Dr. Joel Weinstock, professor and director of gastroenterology at Tufts Medical Center in Boston.
Weinstock has been working in
this field since the early 1990s. He agrees with other scientists that
parasitic worms have a calming effect on their hosts' immune systems.
In 2005, he published a study that found 23 out of 29
Crohn's patients went into remission after receiving helminthic therapy. He used the pig whipworm after learning that pig farmers are not affected by their chronic exposure to it.
The New York Times has covered the work of Dr. Joel Weinstock, professor and director of gastroenterology at Tufts Medical Center in Boston.
 |
| Lupus can be cruelly disfiguring after repeated cutaneous flares. |
He believes a "worm-based" pill may be used to treat a variety of autoimmune disorders in the near future.
MAYBE WE REALLY DO NEED THOSE WORMS
"It's possible that the human immune system
developed in a way that is dependent on parasitic worms to regulate immune
responses," according to a 2006 article in Medical News Today.
In "Parasitic Infection and Autoimmunity," a November 2009 article in the journal Lupus, the authors describe an ongoing study of "protection
from autoimmunity by parasites, models of parasite-related autoimmunity,
molecular mimicry, the impact of parasitic molecules on the immune response and
the association between parasitic load and the degree of autoimmunity."
It's not a simple remedy. Too
many worms can lead to anemia or obstructed bowels. The wrong kind can cause
considerable suffering, even death.
 |
| Too many worms. The wrong kind of worms. Considerable suffering. |
As multiple studies and long-term trials have discovered, however,
there are worms that appear to be "safe and effective" in treating
autoimmune diseases, and there are viable ways of dosing humans with
these homely but helpful life forms.
Probiotics are thought to modulate the immune system, just as parasitic worms do, though perhaps not as effectively. So until helminth research has progressed a bit farther, maybe it's worthwhile to take the readily available, over-the-counter supplements, just in case they help reduce the damage that lupus does to our organ systems.
International knowledge healthcare provider BMJ and the Lupus
Foundation of America (LFA) have announced that they have joined forces
to publish the first open access journal dedicated to the poorly
understood and potentially life threatening disease, lupus.
Lupus Science & Medicine will offer timely global access to the latest scientific advances in lupus. The title will officially launch early next year.
Probiotics are thought to modulate the immune system, just as parasitic worms do, though perhaps not as effectively. So until helminth research has progressed a bit farther, maybe it's worthwhile to take the readily available, over-the-counter supplements, just in case they help reduce the damage that lupus does to our organ systems.
UPDATE
Washington, DC (PRWEB) October 25, 2013
Lupus Science & Medicine will offer timely global access to the latest scientific advances in lupus. The title will officially launch early next year.