Friday, September 30, 2011

Candida. Part One of many, I'm sure

Today's topic is Candida. Not the female name. Not the Abba song. The fungus, the yeast, also known as thrush (in the mouth), a.k.a. yeast infection (in the hooha). But if you have Candida infections in the hooha or the mouth, you've probably got a systemic problem- you're swimming in yeast.
And here's the thing about systemic yeast overgrowth- the symptoms overlap a LOT with autoimmune disease.
  • Frequent stomach pains and digestion problems
  • Skin problems (skin infections, eczema, psoriasis, acne)
  • Foggy brain / Trouble concentrating
  • Constant tiredness and exhaustion
  • Anxiety
  • Mood swings
  • Obsessive compulsive disorder (OCD)
  • Anger outbursts
  • Irritability
  • Headaches
  • Intense cravings for sugars, sweets, and breads
  • Itchy skin

Knowing how hard it is to nail down a diagnosis of most autoimmune diseases, especially lupus, wouldn't it be good to find out whether we had a yeast overgrowth? Perhaps even just a yeast overgrowth, and not an autoimmune disease. Or maybe an autoimmune disease that was caused by or made worse by a candida overgrowth... Definitely worth looking into.

What causes candida overgrowth? One really big precipitating factor is use of antibiotics. The rapid rise in Candida overgrowth in the US immediately followed the beginning of widespread use of antibiotics. There are good, friendly bacteria in our intestines that break down our food and the fiber in it. They also keep the candida in check. But antibiotics are like atom bombs- they kill everything, not just the one bacteria the doctor prescribed it for. The good bacteria become "collateral damage" and now we leave the door wide open for the candida to move in and take over, wreaking havoc.

Unfortunately, another thing that causes candida overgrowth is use of steroids such as prednisone, the very drug we are using to treat the symptoms that were possibly caused by candida overgrowth.

Twice I have gone on a candida diet - anti-candida, not pro candida, though most of my life I've been on a pro-candida diet and didn't know it. Lots of sugar and carbs. Both times were after a 9-month course of prednisone. Once I used the diet plus herbs, and once I used the diet plus nystatin (a prescription which is hard on the liver, but effective).

I got to thinking "It's time again," as I have not done a candida diet/ treatment program since my 3rd round of long-term prednisone, and I'm pretty sure I have a Candida problem again. I was waffling on pursuing the idea again when I received a letter from someone who heard me on the radio back in January in Florida and had totally cleared up her lupus by doing the candida elimination. She sent me the info for the National Candida Center, and I'm working with them now. Thank you, universe, for that confirmation, and friend, for taking the time to write me.

I'm doing some tests over the weekend to be certain, and I'll tell you all about those in the next post.

Are you curious as to whether you might have a candida overgrowth?

Do these self-tests here:

To your good health and mine!

Carla Ulbrich, The Singing Patient
_____________ - health coaching - 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:

Tuesday, September 27, 2011

Lupus Speaker/ Blogger/ Author Sara Gorman in NYC this Thurs. 9/29

Hey friends!

Coming up very soon is a great opportunity to hear from Sara Gorman, author of Despite Lupus.
She is presenting a workshop in New York City on Thurs. Sept 29 at noon on living well ... yes, despite lupus!

Please note: although it is free, you need to call and reserve a space in this workshop.

This is a monthly series, and if you are in or near NYC and have lupus, what a great resource.

I tried to upload their gorgeous flyer onto this blog to no avail (I'm not the most tech-savvy blogger on the planet). So I'm pasting in the info here. Bottom line- here's the info.

Thursday, Sept 29, 12-2 PM
Place:  Conference Room A, 2nd Floor
Topic:   Living Well, Despite Lupus!

Sara Gorman, Health Blogger, lupus patient of 10 years and author of “Despite Lupus: How to Live Well with a Chronic Illness”

The SLE Workshop is coming up!

If you have lupus, you know first-hand the emotional and physical challenges that can accompany life with a chronic illness.

Please join us for this special guest presentation by author and health blogger Sara Gorman, who will share her perspective on  her most important lessons on living well, despite her illness.

Sara Gorman was diagnosed with systemic lupus at the age of 26. As she relates in her book,  she was determined not to let lupus rewrite her plans for the future, as she fought to maintain her demanding work schedule, social life and invincible attitude. But after four years, she felt  she was “fighting life, not living it.”

In Sara’s words, she began to “work with the disease rather than against it, and decided to start living well – despite lupus.” Learn about the steps she took to redirect her life to achieve this.   
A native of Indiana and graduate of the University of Notre Dame, Ms. Gorman resides in Virginia with her husband & two young daughters.

After the presentation, Ms. Gorman will join us for an informal group discussion where members can share their thoughts and experiences regarding this personal topic, as well as an open discussion.

You will also have an opportunity to meet Lysa Silverstein, our new Social Work Intern and SLE Workshop Coordinator. Please contact Roberta

PLEASE CALL TO ATTEND: To attend the workshop or for additional information, please call Roberta Horton, LCSW, ACSW (212) 606.1033  and leave a message with your name and phone number. Space is limited.

The SLE Workshop is a program of Hospital for Special Surgery’s Department of Social Work Programs.  Summaries of selected programs are available on our Hospital’s website at

Hope to see you there!

Carla Ulbrich
The Singing Patient

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. 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.

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%.

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. . People gluten intolerance suffer the same symptoms as those with Celiac, but the blood tests come out different.

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. . 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! . 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 Ulbrich, The Singing Patient

"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!

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. attempts to throw some theories out there in this article 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
_____________ - health coaching - 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, 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 ), 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: )

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 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 Ulbrich, The Singing Patient
_____________ - health coaching - 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: