Tuesday, September 6, 2011

Causes of Autoimmune Diseases

Last time, we discussed possible reasons why more women than men develop autoimmune diseases. In the case of lupus, it's 9 women for every 1 man who is diagnosed with lupus.

Slate.com offered some possible theories for the causes of autoimmune disease, based on the gender imbalance: genetics, pregnancy/ birth leaving another person's cells in your body, and estrogen. Here's the problem with these theories: the new conventional wisdom is that genetics do not really cause disease. As Dr. Oz would put it, "Genetics load the gun; lifestyle pulls the trigger." Wish I had a better, less violent metaphor, but it does get the point across. Genetic tendencies are not our inevitable fate. Just because I'm in a bar, it doesn't mean I'm going to get drunk. (Slightly less violent metaphor?)

Now before I sound like I"m blaming the victim, let me state 2 things. One, I've been living with lupus for 20 years, so I'm talking about me, too. Two, many of us are doing things we *think* are good for us, usually because we've been told that it is, but it turns out to be a problem in the long run. I'm trying to empower us to get better, so please take this not as fingerpointing at the sick person, but fingerpointing at what is possibly making the person sick. I honestly believe that none of us wanted or chose to have lupus.

In my opinion, everyone with an autoimmune disease should be tested for the following:
1) Vitamin deficiencies, especially Vit. D
2) heavy metal poisoning, including mercury
3) Celiac disease and Gluten intolerance
4) other food allergies
5) Candida overgrowth

Any one of these, and certainly a combination of these, is going to cause problems. And if left untreated, the problems will cause problems. Multiplying like rabbits. And not the good cute rabbits who lay chocolate Cadbury eggs on your lawn on Easter. Mean rabbits.

And here's the thing I was talking about before- when we do stuff we think is good for us, like stay out of the sun because we have lupus, we worsen our vitamin D deficiency. We *must* supplement with high quality vitamin D if we are avoiding the sun, or live north of Maryland, esp. between October and May. Symptoms of vitamin D deficiency include depression, chronic fatigue, weight loss, diabetes, heart disease, stroke, osteoporosis. http://www.vitaminddeficiencysymptomsguide.com/

There are so many examples of us doing something that's not even fun, thinking we're making ourselves healthier when in fact we're making ourselves worse. You would think if you're going to pay the price for bad decisions, you could at least enjoy yourself along the way. We get a cavity, so we go to the dentist, and he gives us a filling. that's made of MERCURY, a known toxin, extremely poisonous. It can cause rashes, muscle weakness, kidney function, memory impairment, neurological problems, insomnia (is this sounding like lupus to anyone?). BTW, there are non-mercury fillings available.But you need to ask your dentist if (s)he is mercury-free. If your filling is silver in color, it definitely has mercury in it,  as much as 55%. http://en.wikipedia.org/wiki/Mercury_poisoning

We think we're being healthy eating whole wheat bread. Sounds like a nice hearty, healthy food. But not if you have Celiac disease or gluten intolerance. Celiac causes malnutrition. If you have Celiac and continue to eat foods that contain gluten, it will kill off all the villi in your small intestine and make you unable to absorb nutrients from your food. You can then stuff yourself and still be starving from malnutrition. Now there's a magic trick I don't want to volunteer to be a part of. Milk products- another food we were told was healthy- is also a problem for people with Celiac. http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-symptoms . People gluten intolerance suffer the same symptoms as those with Celiac, but the blood tests come out different. http://gluten-intolerance-symptoms.com/

get tested for other food allergies. 100% of lupus patients have food allergies. 100%?! And food allergies come in 2 sizes: immediate (you know these- you eat shrimp, you have hives a few hours later; you eat peanuts, you can't breathe; me, I eat pineapple and my tongue immediately itches then hurts for 3 days- those kinds of food allergies are obvious); but then there's the delayed reactions- you could eat something then get joint pain that doesn't show up for as long as 4 days later. Who's going to figure that out? Well, a blood test, that's who. Or, alternately, the elimination diet. http://en.wikipedia.org/wiki/Elimination_diet . People blame autoimmune diseases and symptoms on genetics, sin, bad karma, or some symbolic psychological issue manifesting itself... Yeah, OK, and maybe I'm just allergic to cheese. On top of whatever I started with, I developed so many new allergies after taking prednisone, I practically needed to live in a bubble. A latex free bubble that is.

Here's another one, and all too common. We get the flu or bronchitis and we go to the doctor- the responsible thing to do- and he gives us antibiotics. Which, if you have a cold or bronchitis, doesn't really help, because those are viruses, not bacteria. But we take it anyway to "avoid getting a secondary infection," but really because that's the only trick the doc has up their sleeve. When the only tool you have is a hammer, everything looks like a nail. Well, when you take antibiotics, they kill off all the good bacteria in your digestive system. Yeah, our digestive system is filled with all kinds of cooties, and we need those cooties. Those good cooties are what we need to multiply like (good) rabbits. Once the good cooties are killed off, the bad cooties, especially candida can take over and wreak havoc. And not just the "inconvenience" of having a smelly yeast infection or thrush, which are gross, but I'm talking systemic problems: brain fog, digestive problems joint problems, exhaustion, irritability, headaches, rashes, sugar cravings, and worst of all- zits! oh Lord not zits! http://www.candidasymptoms.net/#candida_symptoms . Know what else causes candida overgrowth? Steroids. Prednisone. Oh the irony.

OK, that's a lot to chew on, even though it's gluten free. And you could just go on a candida diet or gluten free diet without getting tested, but trust me. Both of those diets are so challenging, especially at first, that you'll want to know for sure that you need to be on them. It will help you stay motivated. You can get tested for heavy metals, candida antibodies, celiac and gluten intolerance antibodies, and vitamin deficiencies and most of these tests are just blood tests. The celiac one can involve an endoscopy and that's  a bigger deal, but if you have celiac and find out, it would be a life-changing piece of information.


Until next missive-
Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get the book! http://tinyurl.com/348hroc

Friday, September 2, 2011

Why Do More Women Than Men Get Autoimmune Diseases?

Interesting question, isn't it?

OK, I stole this question from another article, but believe me, the question has crossed my mind many times, as well as anyone else's who's been to any autoimmune support group.

9 out of 10 lupus patients are women.

Slate.com attempts to throw some theories out there in this article http://www.slate.com/id/2302917/ as to why more women than men are suffering from these diseases. (Just to be clear, I don't want more men to get these diseases...) :

Theory 1: Estrogen vs. testosterone. Estrogen boosts immune response to infection. Testosterone suppresses it.

Theory 2: Genetics. Women have 2 X chromosomes; Men 1X, 1 Y. That 2nd X has something to do with immunity.

Theory 3: microchimerism, the presence of someone else's cells in your body.This happens during pregancy and birth.

IMO, only the first theory makes any sense.

The second theory is too vague, and just another stab-in-the-dark, blame-everything-on-genetics-without-any-actual-proof statement.

The third theory is based on the assumption that all women are or will become pregnant. a great many women with autoimmune disease have never been (and may never be) pregnant. And what about those who get the disease before getting pregnant? And what about the 10% of lupus patients who are guys who are extremely unlikely to have ever been pregnant? Doesn't hold up. I hope no one is pouring money into researching this theory.

Which theory would I would follow down a rabbit hole with my resaerch dollars? Theory 1, based on the difference in hormone levels. It meshes with the patient demographics- most women develop these diseases in the years their estrogen is highest, age 20-40.

And, since we're looking for things girls have that guys don't here are some other theories about the causes of autoimmune disease:

1) slumber parties
2) pillow fights
3) bras
4) lacy underwear
5) lipstick
6) barbie dolls
7) gossip

Who wants to fund my research on whether gossip causes lupus? Rumor has it, it does...

_______
Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs

Thursday, September 1, 2011

Sjogrens vs Lupus: Smackdown

OK this is going to be a long rant. I'm mad.

I am a regular contributor on Allexperts.com, where people can write in about, well, anything, and ask an expert their question. I signed up as an expert in lupus. From the angle of living with it for 20 years and trying everything under the sun to deal with it. And some of it working quite well. But that's another post and not part of this rant.



What saddens me is the question I get the most often. It's not "I have lupus- now what?" or "Is there anything I change in my lifestyle to help reduce my need for medication? or "How do I keep my spirits up?" or "Hey Carla why are you so awesome?".... No, the question I get the most often (in various iterations) is... (have you guessed yet?)- "Why doesn't my doctor want to diagnose me with lupus?"



Now at the risk of sounding like a "back in my day" story... Back in my day, if you had a positive ANA test and 4 of the 11 classic lupus symptoms (see list here http://tinyurl.com/3lwpa78 ), you got diagnosed with lupus. Of course this was after 2-5 years of schlepping around to various doctors being misdiagnosed before anyone even thought to look for lupus. But once they started looking for it, now all you had to do to qualify to join the fabulous club of lupies was have 4 symptoms and a positive ANA.


Not anymore. I guess the lupus club has too many members now, much like how academia has too many PhDs. Now they have to figure out a way to weed out candidates and discourage them (raise the minimum SAT score, take fewer candidates, jack up tuition, act like an ass so they don't want to stick around...). All in hopes that they either give up and go away (gee, also reminds me of applying for disability) or it takes them so long to finish their degree that you're already retired when they graduate.

Maybe the CDC has put a cap on how many new lupus cases are allowed a year, lest we have an epidemic reported (never mind that we have an actual epidemic- just don't let it show up on paper!). Maybe doctors have been watching too many episodes of House "it's never lupus" MD and have started to believe it really isn't ever lupus. All I know is if you want a lupus diagnosis in 2011, you're in for an uphill battle. Oh yeah, on top of your uphill health battle. Because being sick is apparently not enough to have to deal with. Now you have to diagnose yourself then build a case and convince them to give you the diagnosis you went and figured out for yourself. And then pay them for the privilege.

I suppose one reason I was ultimately diagnosed with lupus, and very definitively, and despite the fact that I am also positive for Sjogren's, was that I had 10 of the 11 classic lupus symptoms, plus all 4 "bonus" symptoms. (here's the list again: http://tinyurl.com/3lwpa78 )

I wish that story weren't so common. It's terrible how people suffer because they aren't listened to carefully enough.

20 years ago, when I got sick, not enough doctors would think to even look for lupus. Now it seems like they've all heard of it, but all they've heard is "it's never lupus- call it something else." I would love to get to the bottom of this trend. Why are they so resistant to giving a lupus diagnosis? Someone please tell me. I'm sure the answer will enrage me (even further), but I want to know.

It still happens even after getting diagnosed- they want to un-diagnose you! I've been living with this for 20 years and still every time I see a new doctor, they don't believe that I have lupus- even when I bring them my 10 pounds' worth of old medical records. They run all the tests all over again. Seriously, they look at me accusing and and say "Who told you you had lupus?" I'm like, "You want the list alphabetically or chronologically?"

Why would I lie about such an annoying and socially disrespected disease? If I picked a disease I'd pick something that's not a punchline. But they have to run their tests and then march back in the next day and announce to me that I have lupus. Wow, how *ever* did you figure that out, you mad genius?

The current favorite substitute for a lupus diagnosis that I hear over and over from patients writing to me on Allexperts.com is Sjogrens. (and sometimes "Mixed Connective Tissue Disease").

Being diagnosed with Sjogren's does NOT mean you don't have lupus. You can absolutely have both. I have Sjogren's and Lupus- and also Raynaud's. All 3 are autoimmune. It's very common to have more than one autoimmune disorder. Some say I have "secondary Sjogren's" - meaning the lupus is the primary disease. I would agree with that, but whatever.

Let's break it down and cross-reference the symptoms lists. There is some overlap. Short break from rant while we insert lists.

Sjogren's syndrome symptoms include:
  • dry eyes
  • dry mouth
  • joint pain or inflammation (arthritis)
  • Raynaud's phenomenon
  • lung inflammation
  • lymph node enlargement
  • kidney, nerve, and muscle disease
lupus symptoms which overlap with Sjogren's symptoms:
  •  Raynaud’s phenomenon
  •  joint pain/ inflammation
  •  lung inflammation of the lining around the lungs (pleuritis)
  •  Kidney disorder – persistent protein or cellular casts in the urine
  •  Neurological (nerve) disorder – seizures or psychosis
   
lupus symptoms which do NOT overlap with Sjogrens:
  • Fever (over 100° F)
  • Extreme fatigue
  • Hair loss
  • Inflammation of heart lining
  • Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
  • Discoid rash – a rash that appears as red, raised, disk-shaped patches
  • Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
  • Oral ulcers – sores appearing in the mouth
  • Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count),   lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
  • Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
  • Abnormal antinuclear antibody (ANA)

If you have any of these in this second list, definitely be sure to mention them to your pill pusher. I mean doctor.

A few things to consider asking for:
  • kidney function tests.  Sjogren's or lupus can affect kidneys.
  • a second opinion. On that visit, I suggest you bring a list of all your symptoms so you don't forget to mention anything. I would put a star next to any symptom on your list that cannot be explained by Sjogren's. If that doctor also insists you only have Sjogren's and not lupus, ask him to please explain what he thinks is causing your non-Sjogren's symptoms- especially if you have rashes, hair loss, anemia, fever (and of course your positive ANA test).
  • consider bringing a trusted friend to your appointment with you. Doctors are used to that.
End of rant, and a few reasonable parting words:

Lastly, try not to be confrontational with the doctor. If you push, they usually push back. Try using language like "I'm concerned" "Can you help me figure out" and "do you think...?" We want a spirit of cooperation (not submission, cooperation) and so try to use that kind of cooperative language, even though you must be frustrated. Take a deep breath, and

And if you are a praying person, that doesn't hurt either.

My best wishes to those who are struggling for a proper diagnosis-
And one last thing...  %$#*&*#*!!

Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get the book here: http://tinyurl.com/348hroc

Monday, August 1, 2011

13 Diseases that are Difficult to diagnose

Here we go again. Those of us with lupus are on another list of "diseases that are hard to diagnose."

Check it out:
http://www.insurancequotes.org/13-most-difficult-diseases-to-diagnose

The list includes:
- ALS (Lou Gherig's)
- Fibromyalgia
- Lupus
- Crohn's
- Cushing's Disease (which is basically the same effect as being on a lot of prednisone, only your body is creating the cortisol)
- Celiac Disease
- Chronic Fatigue
- Lyme Disease
- Parkinson's
- depression and bipolar disorder
- hypothyroidism
- MS
- Mesothelioma


IMO, this article, while interesting and a good jumping off point for debate, is full of excuses.
Patients are needlessly suffering untreated for years on end not because these diseases are hard to diagnose but because our system and its priorities are seriously messed up.

And now, my 9 *real* reasons these 13 diseases are hard to diagnose:

1- Assumptions. Doctors don't take patients' concerns seriously and assume they are "just depressed," so it takes several visits before they even start looking for an actual physical problem. This is markedly worse when the patient is female. If you aren't bleeding profusely, you're probably imagining your problems and you just want attention (oh yeah the doctor's office is where I go when I want attention. HA!)

2- Ridiculously short time with patients. The cost of overhead (rent, office staff, etc.) is so high and insurance companies put the squeeze so hard on doctors by discounting allowable payouts, that if doctors spend more than 8 minutes with a patient, the doctor is losing money.

3- Priorities are upside-down. Doctors do not realize or believe they are in the business of customer service, and that without patients, they have no medical practice. And yet, when we go into their offices, we are last priority. After the office staff, the insurance company, the pharmacist, the lab techs, the drug reps and the pizza delivery guy have all been taken care of... OK, now we can see you, Mrs. Jones. Oh she left? Well there's more where she came from. She's probably a hypochondriac anyhow.

4- Patriarchal CEO attitude. Most American doctors want to operate in a top-down, giving orders kind of manner, rather than a cooperative partnership with patients, even though the patients may have more knowledge than the doctor on their own condition. Some doctors are threatened by empowered knowledgeable patients and get angry when we go looking for answers in chat groups and on Web MD. I had a doctor fire me as a patient because she didn't like me "challenging her authority" by bringing in articles and asking questions. And she mocked me for trying alternative medicine. Many don't want to listen to us when we ask for specific tests or for them to consider we might have a certain disease. Look I've got all day to check it out and my life depends on it, so let me be involved!

5- Poor listening. American doctors (as a group, with some exceptions, but as a group) have terrible listening skills. How can you figure out what is wrong with me if you won't listen? I had doctors tell me I had bronchitis- and I wasn't coughing! I had no phlegm! I've had bronchitis at least a dozen times, and this was not bronchitis. But they wouldn't listen. Then they gave me antibiotics which made me even sicker.

6- Gadget-happy. American doctors rely so much on technology and fancy tests that they have lost touch with their intuition. They have a reputation among the international community of being test-happy and making every event far more expensive than necessary.

7- For-profit health care. As long as making a buck off people's suffering is the number one priority- and it is for big pharma, insurance companies, and even hospitals- the priorities are going to be screwed up.  The kindest doctors in the world can only operate so effectively inside this system. If they want to be free of the demands of these hungry hungry hippos, they have to operate a cash-only, no insurance, no office staff (no overhead) practice. And then they can spend all the time they like with patients, relax, and let it be all about the patient's suffering and how they can ease or end it.

8- It's never lupus. Thanks a lot House, MD, for your one-man led anti-awareness campaign.

9- Reluctance to diagnose. doctors don't *want* to diagnose these diseases. Lately it seems to be harder and harder to get and to hang onto a lupus diagnosis. I can't speak to whether that is the case with MS or ALS or Parkinson's, but from what I'm hearing from other lupus patients, doctors seem to be going out of their way to avoid diagnosing people with lupus, and even trying to un-diagnose people with lupus who have been living with it for years. It used to be simple- if you have 4 of the 11 classic symptoms, you were diagnosed with lupus. Now it seems they want you to have all 11 plus certain blood tests (ANA, anti-DNA, C-reactive protein, etc.). It's like they've run out of room so they had to raise the standards. Like when a university has too many qualified applicants, so they raise the minimum SAT score.

I don't know if the government is pressuring doctors to avoid the lupus diagnosis so they don't have to give disability status, or if the CDC doesn't like the statistical trend of exploding rate of autoimmunity, so instead of making people healthier they tweak the numbers by refusing to diagnose... Call me a conspiracy theorist, but there's something weird and fishy going on here when the same symptoms that would have got you diagnosed 20 years ago are no longer sufficient for definitive diagnosis. I'd really like to know what's going on behind closed doors on this one.


And those, my friends, are my 9 reasons which these 13 (and many other) diseases are supposedly hard to diagnose.

Carla Ulbrich
The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
get the book! http://tinyurl.com/348hroc

Thursday, July 28, 2011

The Straight Poop

OK, people, it's time to give you the straight poop. Well, actually it's more likely shaped like a question mark. Yesterday, I ate so many carrots, including a glass of carrot juice that today my poop was orange. Upon sharing this, I heard back from my friends who eat lots of spinach and get green poop, and those who eat loads of beets and have fushia poop. Who says poop has to be brown? Poop the rainbow my friends!

The great thing about eating something brightly colored, then seeing it in your poop, is that you now know how long it takes food to pass through your digestive system. If you've ever changed diapers, you know that just a few hours after feeding the baby peas, you get green poop. Healthy babies digest very quickly.

The fact is, as we get older, most of us here in the US don't poop enough, and we don't look at our poop, and neither do our doctors. But poop and poop habits (or lack thereof) can tell you a lot about a person's health. So let's talk poop.

According to Dr. Oz, who talks about poop a LOT on his show, "You should see a doctor if you poop more than four times a day or if you don’t go to the bathroom at least every other day.   To help cure constipation eat things like fiber, probiotics (yogurt, kefir) and drink lots of water.  You should also read Dr Oz’s segment on Constipation Causes, because there are other things that can constipate you, even if you drink lots of water and eat plenty of fiber.  Also, overuse of laxatives can cause constipation."

Know what else causes constipation? Narcotics.Yes, voice of experience here.

Know what can cause the other extreme, over-pooping? Celiac disease, IBS, Crohn's, and food sensitivities, such as gluten intolerance or lactose intolerance (anyone here watch the Big Bang Theory where Leonard always has a poopfest if he eats dairy? New meaning to "big bang"...). And in my experience, overconsumption of caffeine. Pooparama!

Speaking of Dr. Oz and his frequent poop-themed segments, I thought bodily functions were not allowed on network TV... unless, I guess, you have a white lab coat on. hmm, maybe if I sing my poop songs in a white lab coat, I can get onto more radio stations. Wait... you can't see my clothes on the radio...

Well, this is internet, and for now it's uncensored, so please enjoy today's theme song, The Colon. Keep eating healthy fiber, drinking plenty of water, and enjoying your quality time in the small room with one seat (hopefully only one seat).

Happy healthy pooping to you all!
And in the spirit of Triumph the Insult Dog, this was a great blog topic....
for me to POOP ON!



Carla Ulbrich
The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
http://tinyurl.com/348hroc