Thursday, September 30, 2010

Candida: Autoimmune Diseases and their Treatments

Candida is a yeast/fungus that is normally present in our bodies - in our intestinal tract aka gut. When Candida escapes the gut and travels throughout the body, it's called Systemic Candida. Systemic candida can be a serious problem.

Those with adequate immune systems and diets don't usually find they have much of an issue with candida because our bodies fight it off adequately and we don't suffer many symptoms. However, many autoimmune diseases are treated with therapies that encourage the growth of candida, especially oral and vaginal candida. I know Sjogren's Syndrome, Graves' Disease and Lupus are three of them. Do you know of any others?

Candida itself has been implicated in many disorders and diseases including autoimmunity and even cancer. It's connection with inflammation is very clear. Which is the chicken and which is the egg? I think it's difficult at best to discern, but we're trying!
Candida is a buzz word within many health communities.

Here is a short discussion on the AARDA (American Autoimmune Related Diseases Association)

**Have you had Candida problems since beginning your treatments, or perhaps directly related to your autoimmune disease?

**How have you treated your candida most successfully?

**How do you deal with the online hype re: candida infections? Do you believe them? What is the most helpful candida site you have found?

**What are our doctors saying?

Here are some helpful sites I've found discussing Candida:

National Candida Center
The Candida Diet
The Lupus Site - infections
Daily Strength - Sjogren's Syndrome Forum discussion
The Environmental Illness Resource
Comment by Janeen on September 30, 2010 at 6:38pm
Great post Ellen! I tweeted it :)
Comment by Peninah on September 30, 2010 at 8:00pm
Hi: Would you be willing to add another helpful site? Most all of us deal with issues related to Candida.
Comment by Ellen S on September 30, 2010 at 10:25pm
Thanks Janeen! .... and thanks Peninah for the helpful addition to the post too :)

Saturday, September 25, 2010

Keeping Myself in the Dark

Autoimmune patients frequently are told to stay out of UV light. Lupus and Sjogren's patients particularly, although other autoimmune diseases also can result in dangerous and painful flares when sunlight damages cells and causes an immune response.

When I was younger, I would go out into the sun a lot. I'm an outside girl and I hate being cooped up inside. Even though I do actually tan very easily, I would go outside and come back in with inflamed skin that itched. Sometimes it would turn a little pink, almost like a
sunburn - but different. Not bad though. Because I had that first diagnosis of Lupus, I assumed that's what it was. Then I was *undiagnosed* with Lupus (blunder) and the rash was then a mystery. Eventually the rash turned into nasty blisters and my skin would come off in chunks - so not attractive, and surprisingly painful. My skin got thick and itching was a constant battle for me. When I was re-diagnosed with Lupus I was warned to stay out of the sun at all costs. I began to stay inside, but even then it took many months to heal and for the itching to stop. My skin is still thick along my neck and upper chest - a lasting sign of what I went through for those months.

I found I flared when going into stores for long or if I drive for more than an hour or so, regardless if I have sunscreen on. The lights in stores are very bad about producing uv light waves that hurt autoimmune patients. I already wore sunglasses because of serious intractable Migraines triggered by fluorescents and other types of lights. I began to wear sunscreen, but paradoxically found that it also made me sick - some chemical I suppose
I don't tolerate well.

Then we decided to get really serious about it. We had lived for about 10 yrs or so with 'attractive' black trash bags hanging in the windows of the rooms I frequented like the office and bedroom, in an attempt to block all the light. It worked, but just so you know, this is an extremely unpleasant way to live. I kept thinking I would get better and we could take them down and live normally again. That didn't happen so we removed all the windows in the house and had them replaced with extremely low UV, tinted windows, and for the first time in years I could open my curtains and see outdoors again! I wish I could convey the joyful feelings that went through my mind when we changed out those windows! I had always taken windows for granted, but I don't anymore.

When I go outdoors or into stores I wear my long hair down around my face (I can't tolerate hats), and long sleeves. Sometimes gloves. Never shorts or flip-flops. Although I have an in-ground swimming pool, it hasn't been used in 3 years which makes me almost want to cry as I used to swim every day from the time I was not quite 8 yrs old. I try to go
outside only in early morning or at dusk and try to keep my outdoor time to a few minutes instead of hours.

I'm always looking for new ways to be able to go outdoors or enjoy the sunshine without actually hurting myself.

How do you keep the uv rays from causing problems? What are your favorite products? Techniques? Tricks?
Comment by Amy K on September 26, 2010 at 1:27am
Truly, Ellen, you have endured so much. How you got by without the light from the windows for so long, I will never know, but I am so glad you have your windows now!

About a week ago I spent the whole day in bed, and I can't tell you how often I gazed out the window and found some comfort in seeing that the sky was a vibrant blue and watching how the sunlight sparkled on the leaves of the trees. I truly do no know what I would do without windows on days like that!

This would be such a tough challenge. I wonder if there are sunscreens that are paraben free, fragrance free, etc. that could be tolerated? Can you wear linen? That tends to be cooler than a lot of other fabrics during the warmth.

I sure wish I had some good ideas for you and the other people who suffer with this kind of sensitivity.
I have a tendency to get rashes and turn red real easily, even if I'm not burned, the sun brings out the red in me. This Summer, on more than one occasion, I had people tell me I was getting burned and that I should take cover, but it was just the redness showing up. I knew I looked funny, but the sunshine and the pool water felt so good to me! For me, the redness would fade later when I was out of the direct sun.

My heart aches knowing that so much of what you enjoy is outside and that you are unable to enjoy it like you desire!

I found this article that compares sunscreens and the three brands that seem the best suited for your needs are: JASON Sunbrellas Sunscreen, Kiss My Face and Desert Essence Organics Age Reversal Mineral Sunscreen. They have few ingredients and are both fragrance free and paraben free. Perhaps you can find out even more about them and if anyone you know has had success with them?
Comment by Ellen S on September 26, 2010 at 1:52am
OMGosh Amy, that is so wonderful! I have tried looking and asking people about what works for them and doesn't have the nasty chemicals that I seem to react to. I still am not sure exactly what it is I'm reacting to, so that doesn't make things easier. Someone told me Dr Mercola had some sunscreen that doesn't have a lot of that nasty stuff in it, but I haven't done any research on it yet and have yet to talk to anyone who has tried it.

Thank you so much for these ideas! They're the first I've gotten after all this time...
Comment by Ellen S on September 26, 2010 at 1:54am
Oh and yes Amy, I love linen :)
Comment by Amy K on September 26, 2010 at 2:29am
Ellen, I just listened to and scanned through Dr. Mercola's page that you linked to, and I have heard others say good things about him. I would be inclined to try his stuff first! Of coarse, comparing it to those others I gave you would be great, if you can compare the ingredients, etc.

Also, I know you said you do not like or cannot tolerate caps, but I wonder how you do in a big floppy woven sun hat? I can see it on you... and you look lovely. =) Just a thought!
Comment by Ellen S on September 26, 2010 at 3:02am
I haven't tried one recently, but things going on my head tend to trigger Migraine and tension headaches for me, so I avoid them. I even stopped putting my hair up in ponytails on bad hair days and when I go to sleep at night. I'm not sure that it has helped in that everyday stuff, but I do know I have to be careful. Somebody should invent a hat with an interior hat band that is soft and comfortable and doesn't trigger spasms for so many of us!
Comment by Dianne Rees on September 27, 2010 at 2:27pm
Just noting that Dr. Mercola (not an MD) has had some dings by the FDA as noted here and here. So as with all health claims on web sites, be wary.
Comment by Amy K on September 27, 2010 at 8:49pm
Good point Diana... it's very important to be wary and research the products and claims!
Comment by Amy K on September 27, 2010 at 8:55pm
P.S. I do not endorse any of the products I mentioned above, they are just products I came across in a search as I looked for a sunscreen that could be good for chemical sensitivities. =)
Comment by Ellen S on September 28, 2010 at 9:50am
Actually Dianne, I certainly don't endorse any physician personally, but do want to explain that Dr Mercola is a DO.

A DO is a Doctor of Osteopathic medicine. Osteopaths are also medical doctors, but their training goes further. Click the link above to find out more from the University of Rochester Medical Center that has a nice short description of the differences between the two. Osteopaths are highly sought because of their additional training. I think we might have 2 MD's here - all others (maybe 100?) are DO's.
Comment by Ellen S on September 28, 2010 at 9:53am
Dianne, I see that the links you provided were letters from the FDA re: labeling. Are there other things we should be aware of?

Thursday, September 23, 2010

Sjogren's patients - do you know what's in your Restasis?

Sjogren's syndrome is an autoimmune disease in which the body's antibodies mistakenly attack healthy cells instead of invaders like bacteria or viruses. In the case of Sjogren's, the areas that are under siege typically include exocrine glands - the glands that produce substances that go to the outside of the body. Examples of things exocrine glands produce are:

Stomach acid
Protective oils in the skin

One of the worst parts of Sjogren's is dry eye. In Sjogren's, the dry eye can become so severe that damage occurs to the eyeball.

Typically, Sjogren's patients are first advised to use artificial tears products when their eyes begin to feel gritty or dry, as well as taking environmental precautions to reduce their symptoms, including eliminating medications like anti-cholinergics that may further dry the eye. Eventually this is often not enough. The next step for many patients is the addition of a product like Restasis.

Although I always encourage patients to be sure and read all the information they can about a drug, often times it's difficult to find the really important good stuff hidden within all the jargon. That's what this post is designed to help you with. I'm going to assume that, if you're reading this and using Restasis, you already know the basics of how to use it and its contraindications etc.

Restasis is essentially Cyclosporin in a special carrier - Castor Oil.


Cyclosporin is a drug designed to suppress the action of the immune system. It's first use was as an anti-rejection drug for transplant patients. When put into the eyes, it's thought to suppress the action of the antibodies in the conjunctiva and goblet cells which lowers inflammation in the tissues there. The drug is powerful and can cause some fairly serious side effects when taken internally. Just because you're putting it in your eye is not a reason to dismiss those potential effects. it may take from weeks to months to see maximum benefit from the drug, so have patience. Unfortunately, research showed that only 15% of patients taking Restasis showed improvement, and 5% of those taking the drops without the cyclosporin added to them also received relief. More about that later. That being said, the company states that there is a high level of satisfaction among patients taking Restasis.

There are medications that should not be taken while using cyclosporin, and some of those are widely used in the treatment of autoimmunity. One glaring example is anti-inflammatories. Check your packaging instructions and be sure your doctor double checks your other medications. Additionally, use of grapefruit or grapefruit juices can be harmful and is definitely contraindicated. Grapefruit juice does something to the body that causes certain medications to build up, and this could be a serious issue with this medication.

Although you may not be taking cyclosporin internally, it is probably wise for Sjogren's patients to also have their dental visits at least every six months. Cyclosporin can cause dental problems as does the symptoms of Sjogren's itself.

Castor Oil

Castor oil makes up the bulk of the carrier used in Restasis. This means that the cyclosporin chemical was added to the castor oil so it can be put into your eye. The makers of Restasis were thoughtful, because they could have chosen any carrier, but they didn't. They chose castor oil which was shown in a 2002 study published in the journal Ophthalmology to reduce the symptoms of dry eye all by itself.

The negative of castor oil, is that it is not uncommon for patients to have an allergic reaction to it. This can include dermatitis, several forms of allergic conjunctivitis and even asthma. It has been shown in a study to actually cause cytotoxic effects in the conjunctiva. Castor oil is also used as a vehicle to deliver some chemotherapy drugs, but because of the increased risk for allergy, researchers are looking for a better way to carry the potent drugs needed for chemo. With this in mind, it's too bad that Restasis isn't offered with a myriad of different vehicles, giving the patient a choice which works best for him or her.

Alternatives to Restasis

I'm told that the company who makes Restasis accidentally found that the carrier itself worked well enough that they began to market it as Refresh Endura. Patients on this site suggest that, because of the problems so often found with Restasis, it should probably be used as a last resort medication only after trying everything else first. Additionally, if patients using Restasis suspect that it may be the cyclosporin causing their problems, a trial of Refresh Endura might be in order so that you don't have to completely stop treating the symptoms by stopping medication altogether. Another community member added his two cents, stating that he tried a product FreshKote that he felt was far superior to either Restasis or Refresh Endura

Interested in reading more about Sjogren's Syndrome? Try these interesting links:

Neonatal Lupus - babies born with SSA and SSB antibodies
Re-evaluating your mysterious symptoms after Sjogren's diagnosis
Dry Eye Solutions
Salvation in salivation
Do you and your rheumatologist disagree on the severity of your dis...

To share this post in your communities, feel free to use the twitter or facebook buttons below, or use this handy short url:

Sources: American Osteopathic College of Dermatology , Dry Eye Talk ,
Views: 368

Tuesday, September 21, 2010

Was it wrong to have my children? Having babies with genetic disease

My kids are basically all grown. This means I had them a l-o-n-g time ago *grin*. Back then, doctors knew about autoimmunity, but hadn't yet identified most of the antibodies, nor ways to test for them. An ANA combined with symptoms back then was the only way to "test" for an autoimmune disease. Those results, combined with your symptoms were important clues, but doctors often got it wrong.

Treatment for these diseases consisted of - well - very little. My doctors' choice was usually steroids. Every time I had an "issue", out came the syringe and prescription pad. Oh yes, they surely did make me feel better, but I worried about what they were doing to my body.

I had a tentative diagnosis of Lupus back then. They didn't call it tentative, but hindsight makes me feel that is what it was when compared to today's diagnosis. I was told virtually nothing about the disease other then "come in when you're sick or hurting, we'll up your steroids".

Right before I chose to get pregnant with my son I was told I probably wouldn't be able to carry a baby to term (other problems). Nobody told me not to try, in fact I was encouraged to go off the meds and try. I was naive and thought I could handle it (miscarriage) okay. I think they were too. To my surprise, I got pregnant in only 2 months. I wanted to keep it a secret, but hubs told the family. Within 2 weeks, I stood up from the couch and miscarried. It happened so fast I didn't really have time to flare.

A week later, I was still bleeding, and got an appointment with an OB/GYN who explained to me that there was nothing he could do. The exam showed I'd dilated, but he worried the miscarriage might be incomplete and I'd need a D&C. I asked for an ultrasound (fairly new back then) and got the first photo of my little boy at 5 1/2 weeks. I had miscarried one of two.

I had beat the odds again.

When he was born, he had a handful of problems, one of which was a horrible rash that appeared within the first few weeks. I was told not to worry about it, that sometimes happens to babies of Lupus moms. I worried I had "given" him Lupus, but was told it would pass. It did.

When we decided to get pregnant with my second child, I went to the doctor to get ready for another attempt. Nobody ever mentioned to me that I shouldn't get pregnant. Their reasoning: I was one of the few who got better when I was pregnant. This was reason to stay pregnant in their minds. Still they kept a close eye on me with weekly visits and ultrasounds, just to be sure. I kept my "baby kick" diary religiously.

Both births were eventful as I experienced threatened pre-term labor with #1 (including bed rest for 2 months) and pre-term labor with #2 that involved a fairly lengthy hospital stay and a lot of medicines. She was born early by a month, but healthy and still quite big. I waited for the rash, but it never came.

After both births, I flared horribly, ending up in the hospital both times. Nobody told me it was a flare, but I recognize the symptoms now years later.

I'm told that, back then women were frequently told not to have children because their diseases frequently would flare, usually very seriously. A very small percentage get better, and lucky for me I fit in that category. I don't know anyone with Lupus who was told that they could pass it genetically, and that might be a reason not to try to get pregnant. Many women simply couldn't get pregnant because of the meds or their symptoms. Not a lot has changed since then.

This brings the question I hardly dare to ask myself - Would I have still chosen to have my children if I knew then what I know now? I'm selfish, because I think I probably, naively, would. I can't imagine my world without my kids, sick or healthy. How do you make a decision like that after the fact?

Both have autoimmunity. I passed on some fairly icky genes. Both are happy to be alive though, and so far they've lived well and have bright futures. I've asked them if I made the right decision. They're both happy with my choice :)

So, where do you stand on the ethics of reproduction when a parent has a known genetic disease? What did you decide? Why?

What did your doctor tell you? Did you agree with your doctor?
Then, the hard question. I guess I don't really expect to get many answers but: Would you change it if you could do it again?

What are members of your communities saying??

Comment by Amy K on October 6, 2010 at 8:52pm
Ugh, Ellen...this question or questions are brutal.
Do we even bother looking back, knowing that only hindsight is 20/20?

I developed fibromyalgia as a result of my second pregnancy. I was very sick throughout the pregnancy and have been "sick" for lack of a better word, for 5 years since. I doubt my daughter would say she wishes her brother wasn't around (depending on the day) but I know that she identifies his birth with "when the happy went away". (Yes, you can hear my heart breaking.) She shared this information with a relative, I don't know how to get over that, or what I could have done differently.

If I had not had a second child, would I be healthier or happier today? I can't imagine my life without my little boy, he brings me so much joy. He brings a whole new dimension to my life. I will admit, I have secretly thought to myself, "if only I did not have a second child"... but only for very brief and fleeting moments. I am so richly blessed by my children. It makes me tearful to think that I ever even secretly thought that, but I suppose it is only natural when I know this one event is what changed my life so dramatically. I can only hope and pray that the future holds lots of good things in it and that my children will never feel like I regretted bringing them into the world, because my life is so much better for it, no matter what the cost.

On the other hand. I was told not to have any more children. I was told that it would likely "do me in". This is mostly because of the severe depression, anxiety, and hyperemesis gravidarum (vomiting throughout pregnancy), hypertension, etc. that I experienced both times, worsening with each one. I have had times when I wanted more children, but have known that it is not what is wisest for me, my health, or the health of the children I already have.

None of this really directly relates to your question as I am not dealing with genetic disease here, that I know of, but it is similar. Just had to share my thoughts. And truly, how I love my children!

Comment by Ellen S on October 7, 2010 at 3:15pm
Awwwwwwww!!!!! They're beautiful!!!

Thank you for being so candid Amy. It means a lot. I know where you're coming from with the guilt aspect. Obviously nobody planned for this to happen to either of us or our kids. Like you, I didn't have the third baby I planned because - well - I had my hands full enough with two high needs kids. I couldn't imagine doing it a third time, much as I wanted to and tried. I was already sick by then and trying to ignore it.

You know me, always trying to look at the positive angle...

What if we hadn't gotten sick? What would our children have grown up knowing? Is it really good to grow up in a 'perfect' situation? To never experience adversity?

On one hand, I would have sacrificed anything to have been able to give them the childhood I wanted them to have, instead of the one they got. On the other hand, both my kids have an enormous understanding of chronic illness. They look down on no one and help whenever and wherever they can. (Do you think I'm just a little proud of who they are now?) Their capacity for empathy, sympathy, understanding and compassion came from somewhere. Yes, part of it was purposeful, but they could just have easily turned their heads and rebelled.

I believe children learn what they live and see and experience. I can only imagine that your kids are going to grow up like that as well, because I know the roll model that was given to them - you.
Comment by Amy K on October 7, 2010 at 11:01pm
Thank you Ellen... thank you...

Monday, September 20, 2010

Prilosec (Omeprazole) and Plavix do NOT mix!

Omeprazole (Prilosec) is a drug we take when we suffer reflux, gastritis or other stomach upset. If we have LPR (Laryngopharyngeal reflux) or Barrett's Esophagus, it's considered a "must". What should we do if we are also on Plavix for clotting or platelet problems?

The basics

Omeprazole is a proton pump inhibitor. It stops the cells in your stomach that are supposed to produce the digestive juices needed to digest your food.

Plavix (clopidogrel) is a drug that is used to prevent your platelets from sticking together and forming clots.

Both of these drugs can be important pieces of the arsenal we use when we have autoimmunity. When used together, unfortunately the Plavix is unable to do its job. You won't know this until it is too late however, so being very aware of this particular drug reaction is really important.

What happens that is so important to my autoimmune symptoms?

Plavis requires cannot prevent clots until it is metabolized in the liver. This requires a special enzyme called CYP2C19. Omeprazole blocks this enzyme, which effectively also blocks the Plavix. The blocking action of the omeprazole appeared consistent no matter if the clopidogrel was taken at the same time as the omeprazole, or later in the day.

The FDA looked into Plavix back in January hoping to identify and warn patients of these interactions. Unfortunately, not only is Omeprazole not the only medicine that blocks CYP2C19, the nature of this reaction is not very well understood. As a result, Plavix labels have been recently updated to reflect the danger of this interaction.

It is unknown at this time if other proton pump inhibitors also block the CYP2C19 enzyme, therefore also causing problems with Plavix. Patients who take clopidogrel and also need to take a drug to reduce stomach acid should discuss their therapy with their doctor. Axid (nizatidine), Pepcid (famotidine) and Zantac (ranitidine) are not known to inhibit the
CYP2C19 enzyme and therefore aren't expected to interfere with the anti-clotting
activity of clopidogrel. Antacids are also discouraged as they may interfere with clopidogrel's ability to block clotting activity.

Although it may be possible to tweak the clopidogrel dosage a little to overcome the interaction with omeprazole, the FDA is silent on what those recommendations might be. Further research is necessary.

Other medicines known to interfere with CYP2C19 include

* Diflucan (fluconazole)
* Felbatol (felbamate)
* Intelence (etravirine)
* Luvox (fluvoxamine)
* Nexium (esomeprazole)
* Nizoral (ketoconazole)
* Prozac (fluoxetine)
* Serafem (fluoxetine)
* Symbyax (fluoxetine)
* Tagamet and Tagamet HB (cimetidine)
* Ticlid (ticlopidine)
* VFEND (voriconazole)

Thankfully, the company that makes Plavix has agreed to continue researching other drug interactions with this potentially helpful drug.

The importance of checking your medicines' warning labels frequently

I am guilty of taking my medicines for granted. When I receive a new prescription I am very diligent about checking for interactions and any other contraindication that would keep me from taking the medicine. I usually try to have patience. I walk out the doctor's door with my prescription in hand, but instead of taking it directly to the pharmacy, I go home and begin searching online for all the information I can find. The same goes for my over-the-counter meds. What I don't do is continually check up on these medicines and catch new warnings such as this. This illustrates again why it is so terribly important to tell your doctor of every single supplement and otc med you're using at any time, as this kind of mistake could be very harmful, even fatal in the right circumstances.

One more important thing...
There is a gene variant that results in reduced production of the enzyme we're concerned about. If you are on clopidogrel and have not had the test to check for this gene variant, you may want to begin a frank discussion with your doctor about it, as this gene variation is very similar in the body to the the reaction of Omeprazole with the clopidogrel.
I posted a while back about genetic testing I had this past spring (see DNA testing - my story, my mystery). One of those tests was for my genetic ability to metabolize clopidogrel. Interestingly enough, I do carry an irregularity that restricts my ability to metabolize the drug. Unfortunately, it is an imperfect world and there are no dosing suggestions for people like me with this genetic variance. Hopefully soon we will have more information that will be easily available to us all.

Have you ever forgotten to tell your doctor about a supplement or OTC medicine you're taking and had a bad reaction? What happened?

Have you ever considered genetic testing to determine your health history or your genetic drug response for medications you might be taking?

Thursday, September 9, 2010

Anklylosing Spondylitis and Emergency Responders - Special Protocols

What is Ankylosing Spondylitis?

Ankylosing Spondylitis (AS) is an autoimmune disease - the body is attacking itself. One of the hallmarks of AS is inflammation - it is the enemy and the cause of the joint destruction and disability of those who suffer from it.

Another term for AS is Brittle Spine Disease. In a normal spine, the vertebra are separated by cushion-like discs. This allows the back to be supple and flexible, and it acts as a shock absorber for each step that we take, and each fall we are subjected to.


AS is more common than Rheumatoid Arthritis, yet it is not always diagnosed appropriately until serious damage has already occurred. It is likely that you know someone with AS and probably don't know it.

AS Degeneration and emergency protocols

When AS becomes advanced, the vertebrae become fused together and the spine can become one large bone instead of many small bones cushioned by discs. On an X-ray the spine appears to look just like bamboo - hence the term Bamboo Spine. Not only is the flexibility gone at this point in the disease, but so is the cushion that many bones together separated by squishy discs would normally have. A slight fall or minor car accident that might not otherwise injure a healthy person can be devastating to an AS patient.

Additionally, because of the fusion and kyphosis (loss of posture and fusion into an unnatural hunched over position) many AS patients suffer, normal protocols in an emergency situation can actually cause devastating damage instead of help the patient as they are intended. When AS has attacked the ribs, breathing may need to be assisted. When it has affected the neck or jaw, basic airway assistance may be difficult, even impossible without incurring serious, even potentially fatal injuries.

The AS Emergency Primer

The Spondylitis Association of America has a series of 3 videos that teach AS patients and emergency medical personnel such as First Responders and EMT's how to properly care for AS patients in an emergency. This is vital information that every AS patient and their family members, as well as all emergency medical personnel in your area should be familiar with:




I'm a First Responder and an autoimmune Health Activist, and have never received any training re: AS in patients. I was very glad to find these videos and am eager to pass them along.

The month of September is National Preparedness Month and is sponsored by the Ready Campaign in partnership with Citizen Corps and the Ad Council. NPM is designed to encourage Americans to take simple steps to prepare for emergencies in their homes, businesses, and communities. Please visit the link above to learn about how you can participate in this year's activities.

Autoimmune and Migraine Aura Oddities: Amazing Adventures in Aphasia

Aphasia - neurologic difficulty processing language, either given or received.

Aphasia can occur as a result of central nervous system involvement in autoimmunity, as well as in Migraine - usually as part of aura.

There are three basic types and of aphasia. If it comes and goes, it is called Transient Aphasia. If it does not go away, it is called Aphasia. A person who is suffering aphasia is called Aphasic.

Different areas of the brain are responsible for different parts of language, which includes reading, writing, speaking, understanding, and calculations (math).

Aphasia in Migraine

It is not a common type of aura, but it does happen and should be taken very seriously. Unfortunately, these auras can imitate stroke and TIA's so perfectly that it can be very difficult to tell which it is, even by physicians. Although the symptoms may feel the same, the two start out very differently.

Stroke and TIA usually are the result of either a blockage of blood flow to the brain resulting in damage and death of neurons, or a bleed which deprives surrounding neurons of needed oxygen.

In Migraine aura, the symptoms occur as a result of spreading cortical depression. A wave of neurologic activity flows across the brain resulting in disruption. The location of the wave determines what type of aura you experience. If the wave involves the area responsible for eyesight, you will see visual oddities. If it flows thru the part of the brain that is responsible for smell, you might smell something odd that isn't there. In the case of transient aphasia, the wave involves the areas of your brain that help you recognize and create communication.

Aphasia in Autoimmunity

When there is CNS involvement in autoimmunity - almost any kind of autoimmunity - aphasia is a possibility. In the case of autoimmunity, aphasia is often more long-lasting than in a temporary Migraine aura. It's possible that the damage can sometimes be permanent. It is difficult to overlook this type of aphasia when it occurs as a verbal or comprehension issue. However, care should be taken that aphasia affecting reading, writing and mathematical calculations are not dismissed. Many patients suffering this type of aphasia will need evaluation and therapy to regain some of their abilities. The process is long and frustrating, but verbal communication is a vital part of being a human being, and as such - well worth the effort.

Aphasia as a side-effect

This is a good place to also mention that there are some Migraine preventives and chronic pain medications that can have aphasia as a side effect. It's wise for Migraineurs and autoimmunies not to assume their aphasia is a part of their attack and seek help as soon as possible - even if it's transient. Check your medications and be sure a change there isn't in order to prevent further attacks. Talk to your doctor and explain it to family and friends so they can help you during an attack.

Remember -

Someone with aphasia has not lost intellect. They may be able to understand you, but not answer you. They may be able to answer but only a word or two. They may not be able to add or subtract, read or write. They may have trouble finding the correct names for things, even the subjects they may be talking about. They may have strange reactions,
such as laughing inappropriately. Describing something may not be possible for them. For more information on the different types of aphasia, please visit The National Aphasia Association.

Aphasia of any type is frightening - I've been there. When you are suffering from its severe forms, you are cut off from the world. I've been to many other countries, but aphasia is much worse than simply not speaking the language of the land. To me, it's more like sitting in an empty house, watching television that is in another language. You can't talk to them, and you may have trouble understanding them if they try to speak to you. You can't interact with them. It's embarrassing when people assume your intellect is impaired. They don't understand your frustration (which can become profound) and isolation, but often continue on as if you aren't there. Depression may easily follow. People may laugh and not understand that when you tell them you are mathematically challenged, you really are. Their perspective is different. Aphasia is very difficult to understand and appreciate by someone who has not experienced it.

The NAA has an excellent page that helps family members to communicate and can be found HERE. Aphasia Hope has a forum for those dealing with the condition. Those who have suffered a non-transient form of aphasia may find special speech therapy software helpful in rehabilitation. One version is found HERE. For an amazing description of aphasia, you can see the incredibly popular TED tv video posted here on WEGO Health about a neuro-anatomist who suffered a stroke called "Jill Bolte Taylor: My stroke of insight"

Do you suffer transient aphasia as part of Migraine aura or autoimmunity?

What is your experience like?
Do you know someone who suffers some type of aphasia?
Did you find this page helpful?

Tuesday, September 7, 2010

Staggering Physician/Patient Ratio for the United States and the Chronically Ill

I ran across some statistics today that stopped me cold...

If the population of the United States is anywhere near the 2010 estimated 307,212,123 people in this post, and the AMA's rounded off figure for the number of practicing physicians is anywhere near accurate, the scary thought for me as a chronically ill patient is - "How are we all going to be able to receive the health care we need when we need it?"

Again, using Spurtler's figures in his post in the WEGO Health group Health Activists And Public Policy 500,000 health care providing physicians to 307,212,123 people seems dangerously high.

Just how high is it? Let's take a look:

Upon further investigation the United States (#52) ranks right down there with #51 Cyprus and #53 Slovenia in terms of the number of physicians per 1000 patients (2.3:1000), and that was in 2002. For comparison, Germany ties with Austria at #23 with 3.4 doctors to 1000 patients, France is #25 with a ratio of 3.37:1000, Italy is #8 and 4.2:1000, and Switzerland is #17 and 3.6:1000.

Thinking that in a pinch you'll choose to head to Mexico or Canada to get the health care you need? You might want to think again. Even further behind us are #58 Canada and the #55 UK, and followed distantly by #79 Mexico.

On this table the 2002 research states that the US has approximately 2.3 doctors for each 1000 patients. That translates to 435 patients for each physician. Spurtler's new AMA figures drops those numbers considerably to 1.628 doctors per 1000 patients, or another way to look at it - 615 patients for each doctor. This is a 41.4% increase in patient load for our doctors in only 8 years!

Photo copyright Ellen Schnakenberg 2010 - One family of geese with 20 goslings at Greater Ottumwa Park - Ottumwa, Iowa

If you were to have a 41.4% increased work load on you over the last 8 years, what would you do? How would you deal with the increase?

This is certainly a drastic change and indicates the deficit in the number of new physicians has not been able to keep up with the number of patients they are serving. If those 2010 figures are compared to the 2002 table mentioned above, the United States would drop in rank to #73, smack between The Virgin Islands and South Korea.

Providing our population stops growing disproportionately to physicians produced (subtract physicians retiring - keep in mind that baby-boom doctors will soon be retiring by the handsful) and each patient has only a single physician, right now that is 615 patients per doctor to carry us into the new millennium - if every doctor is able to manage the same number of patients, which we know is not possible.

Add to that the large number of illegal aliens that are not being counted in these numbers...

Add to that the growing percentage of geriatric patients in need of continuing care...

Add to that, most chronically ill patients of any age have several doctors...

... and the load becomes apparent.

The numbers are not adding up to a manageable picture and I am afraid we are very quickly headed for trouble...

Were you surprised by any of these numbers?

Do these numbers give you any more or less understanding for your own health care experience?

Views: 1223
Comment by Arnon Krongrad, MD on September 8, 2010 at 12:13am
We developed a mobile model to provide surgical service to Americans using facilities abroad. It works and we have relationships in Mexico and the Caribbean. However, there are special issues and you are right for more reasons than you cited. Want to go to Monterey for a knee replacement? Do you mind driving around in a bullet proof van? It's complicated. And, as it turns out, there are ways to just lower costs here.

The broad issue is the evolution of American culture, which has transformed itself into a second-guessing army of compliance officers. Why do you think Poland beat us in getting help to Haiti? They don't have seventeen layers of compliance to go through before every decision. And why do you think anesthesiologists in Trinidad efficiently move patients out of the OR at the end of the case? They don't have to worry that a low-level insurance clerk will deny the claim if some post hoc analysis of "core measures" is imperfect. The problem is very, very broad. Medicine is just one example of the fact that we just don't trust each other.

Good news: We have more military lawyers than Europe has soldiers. We're number1. :-O
Comment by Ellen S on September 8, 2010 at 10:08am
Oh wow. More military lawyers than Europe has soldiers? That is disturbing on so very many different levels.

In order to ask ourselves how to fix the problem, I suppose the first question is - why have we transformed ourselves into a second-guessing army of compliance officers?

I hate to say it, but so many times I see people acting the part of the victim or being greedy - greedy for revenge and money - from BOTH directions.

Why does this happen? I think a lot of it has to do with time. If our doctors had/took more time to spend with patients, even when there is a mistake made there is that relationship to fall back on. There is understanding. This is one reason these figures really frighten me as a patient - we don't have enough time with our physicians for them to see the whole health picture or even be seen as a human half the time as it is now. When your case load has doubled I fear it is the chronically ill who will be left behind.

Doctors I know personally have come to this area expressly because there is a large population of Amish. Amish pay in cash and they don't sue, and especially for OB/GYN's this is very attractive. These doctors can relax and not lose sleep at night because they're worried some unhappy patient is going to try to take away their life savings.

You know, it's okay to say "I'm so sorry, I'm human". Patients forget that physicians are human beings and you are doing your best with what you have.

For some reason patients think their physicians are gods, and when their gods fail them they get angry. They have been slighted, wronged, or are otherwise the victim, but this only happens because they are not encouraged to learn about their conditions and to become proactive in their own care. From the perspective of the patient, they are being "forced" to trust the doctor, so when the doctor is wrong there is real reason for anger.

Unfortunately, as a patient who through the years has been forced to see several doctors, I have seen many who perpetuate this godlike behavior which goes far beyond simple due respect. This is discussed frequently in online support groups as well and is seen as an enormous problem across the board. Instead of our doctors acting as trusted and learned friends who are there to do their best to help us, they enjoy and perpetuate the godlike station to which patients (in their ignorance) elevate them. Physicians don't ask questions, refuse to admit they may not know every answer or that they may be wrong. They refuse to see the patient as a fellow human being who is vulnerable. Healthy relationships are not nurtured from either side. There simply isn't enough time!

Honestly, I see the lack of personal time as the big bad black evil demon here, and I see it growing exponentially in my lifetime. This is what scares me. Where is this going to leave my children???
Comment by Arnon Krongrad, MD on September 8, 2010 at 10:19am
So now ask: Why do American doctors spend less time? Why don't they take email correspondence? Why are they less and less service oriented? One reason is that they are American, not that they are doctors. America is progressively a less thoughtful, service-oriented culture.

Consider my friend the baker who had to take back 100 carrot cakes covered with coconut from a convention hotel. Why? Because somebody in event planning was told a guest had a nut allergy and absolutely -- for fear of lawyers -- refused to hear that coconut, like peanut, is not a nut. And all the assurances I helped to bring from my friend the senior rheumatologist made no difference. It's second-guessing, CYA all the time. So my friend the baker, because of meddling third parties, spent less time with her clients, children ...
Comment by Ellen S on September 8, 2010 at 10:42am
I assume one of the big reasons physicians spend less time with their patients is because of those awful numbers I listed above. You deserve a family life and when you have 50 patients in a day banging on your door, you try to get to as many as physically possible. You take time out of your family time to deal with patients, which I know is frustrating. Am I close?

As a patient, I know how difficult it already is to get an appointment. I have doctors in which I make an appointment in March to be able to get in to see them in June. And I am an established patient! To get a new appt with these doctors is nearly impossible. Additionally, I drive 4 hours to see 3 of my doctors, because either there are none in that specialty near me or those that are near me are too booked to be able to see me. My entire family sees one of them, so we carpool and every couple months he graciously schedules us together in a block of time in which he generally does not see patients at all. It's the only way he can fit us all in together without us having to schedule a year in advance.

Let me ask you this question - If you didn't have so many folks banging on your door needing to be seen each day, would you - personally - make the attempt to spend more time with the patients you see? Or would you instead choose to keep appointment times the same, squish all patients into a 4 day work week and take an extra day off? (I ask because that is what most doctors here do, usually a Thursday for golf)

I do hope that being American does not mean that we cannot be service oriented. Yes, it may make it more difficult, but here in America you can make your own choices. Each of us gets to choose how we spend our time and our day. For me, I choose to spend about 8 hrs a day in service of others. I sit here plunking away hoping to help patients find the information they are not getting from their physicians or elsewhere, so they can take charge of their care and not go blindly forth. With education comes choices and the best informed decisions. This is what I've lived, and this is the service to which I've dedicated myself, as do many other Health Activists. I assume that, as you are here taking time to read and respond to posts, you are the same. My figurative hat is off to you for those efforts. Personally, I won't get financially rich doing it, but folks are living better lives as a result, and that's what it's all about for me. That itself makes me richer than most people I know...
Comment by Arnon Krongrad, MD on September 8, 2010 at 10:55am
The issue is the illegitimate third parties who parasitise the system, taking time and money as they go. How many cents of every health care dollar go to Wall Street profits for devices and medications that bring no actual bedside value? How many to defensive medicine? How many to billboards on the highway and hospital marketing departments that send clerks to tweet from the OR? How many to insurance auditors? Considering that these parties do not actually deliver health value ... you get the point. We're focused in this thread on the health care example. The problem is much broader. The carrot cakes illustrate that well.

I really love being a doctor. I love working with my patients. They have my direct email, which I answer any time, any day, right from my Blackberry. But do I have any patience for an insurance clerk who calls to authorize a CT scan for new onset back pain and vomiting and asks: "Doctor, is there a differential?" You want two minutes of my time? Sorry, they go to that clerk.
Comment by Ellen S on September 8, 2010 at 12:00pm
Aaah, see? I knew you were one of the good ones :)

So, 615 patients per physician (provided each patient only has one doctor) does not seem excessive to you? An increase over 8 years that is estimated as 41.4% doesn't bother you at all? Granted not all patients seek medical attention every year, but many should and I think with the new health care system about to take effect, they will. I hear you on the *parasites* with their hands out, and this too is wrong. My shock is still those numbers - 615 patients per doctor and an increase of 41.4%. I just don't know how we can keep this up...

Insurance is saving me and killing me at the same time. I could never afford my treatments without it, but it is almost literally a full time job dealing with them and their manipulation just so I can get my doctors paid. For me, my next step is taking it to the insurance board of our state to see if we can get some action. I doubt that will make a difference though. What's a patient to do to free up our doctor's time so it can be utilized where it is needed - with patients?! What can we as the public and as your patients do to help?
Comment by Arnon Krongrad, MD on September 8, 2010 at 12:14pm
Shut down the law schools. Get out of Afghanistan. Teach civics. Dust off e pluribus unum.

For medicine to work well, we need a cultural shift that starts with individual responsibility. Because there is no way to legislate morality, if we don't start to act like a community -- one nation, indivisible -- we'll never get doctors, who are almost on the periphery of the health care equation, back to the center. For example, fire elected officials who demand Cornhusker Kickbacks and pork. Demand that instead of having lawyers write health legislation we have patients and doctors write it. Seriously, having lawyers write health care is like having gynecologists write space exploration reform.

There are ways to save tons of money so it can be better spent at the bedside. Our mobile surgical model is one tiny example. But if we don't trust the doctors to do this ... oops, there it is again: We need a cultural shift to trust, service, accountability, civility ...
Comment by Diana Lee on September 8, 2010 at 1:00pm
Um, why demonize an entire profession to discuss this issue? I'm a lawyer and a patient and patient advocate. I actually used to write legislation and let me be clear that I did not set policy. Unfortunately that is not how it works on the federal level. Would we rather have a country where there were no legal protections? I wouldn't. I think we can reach a happy medium. But I suppose it is typical of doctors to hate lawyers. The way the cookie crumbles.
Comment by Spurtler on September 8, 2010 at 1:23pm
Thank goodness we have an MD in our midst who applies his SOAP skills both to his patients and to the community in which he lives. I won't say that I totally agree with him for, I'm sure, we haven't heard all his opinions and I can't agree to agree in the future. For the moment I'll accept his assessment of the major cause and effect arguments on our rush to litigate, a congress voted by the people and paid by lobbies and corporations (you should see my political blog to know how I feel about this one - I'm not linking because you'll throw me out of this group), our acceptance of waste, for-profit health care (another bete-noire for me), and health insurance that interferes with the therapy based on cost (who says death panels are exclusive to the government?). The one issue the good doctor cites and I can't accept is the removal of compliance. I am in the middle of composing some posts about whether or not you can trust the clinical test results that labs perform. As a former CTO of a LIS software development company I have many contacts in this niche community and there are some distrurbing issues that could be prevented with more exhaustive policing of lab practices. So I give Arnon nine out of ten for nail-head strikes.

We are becoming a nation of nut-f*ck-whackos whose model is more Gordon Gheko than St Francis of Assizzi; more Jesse James than Florence Nightingale. Sometimes I just want to bail and then the engineer in me says "Fix it!, Fit it now!".
Comment by Arnon Krongrad, MD on September 8, 2010 at 1:35pm
Diana Lee,

As noted above, the cookie also crumbles with carrot cake.

As for doctors and patients: When I can save an insurance company 40% on major surgery costs, which I do routinely for uninsured patients, and their legal teams hold up a contract for months due to undislosed deliberations and laws that may serve them but not patients, yes, I have a major problem with lawyers: They cost money and put up barriers to care.

Sure, we need some rules. Some compliance. But how much? As the world's leading producer of lawsuits, we're way beyond the "happy medium" you refer to. Can we really legislate and sue and spin ourselves into a functional, happy nation?

The fact is we have too many bureaucrats, compliance officer, lawyers, and lawsuits. Is the legal profession -- are you? -- proud of such sociopaths as John Edwards? Is he a welcome part of the "happy medium?"

The Death of Common Sense pretty well spells out what most of us already know. And as for my opinions, as reviewed above and in the recent Tony Blue Eyes, the problem if broader than just the lawyers.

Join me in calling for a law school holiday. We've got as much justice as we can possibly handle.
Comment by Spurtler on September 8, 2010 at 2:29pm
My commercial philosophy has always been that all characteristics, both good and bad, start at the top and are disseminated throughout the system. At the top of our social system are government, religion and commerce. Today, I see no evidence of any of these systems perpetuating what I call socially redemptive values. I don't think the challenges you cite are merely legally and govern-mentally spawned. I think all three societal leader groups are unworthy of their responsibilities. I also think citizens are rightly burdened with the responsibility to shout when they see wrongdoing. Not voting is a vote! We need whistle-blowers, not compliance officers (but, then we'd have corrupt whistle-blowers, sadly!).

I'm a US Resident, not a citizen, so I have lived in other societies that do not share the challenges of the US. They have their own challenges. However, you will never remove greed and fear as motivators in any type of society. You just need to hold your own character values and also surround yourself with those who share these values. Over time, society can change. Let's hope its an improvement!

Ok, now let's get back to health care activism.
Comment by Denis Van Loan D.D.S. on September 15, 2010 at 2:51pm
Thank goodness I am retired from dentistry. I only see the health care problems getting worse with the implementation of the comprehensive health care plan by the government. It doesn't target dentistry yet, but I'm sure it will follow if the process is not reversed. In my view there will be a disincentive for aspirants to become M.D.'s. Those, already doctors, will will soon be over whelmed with the millions of patients added by the government health care plan. When politics and government get involved I see a deterioration of health care. Politics have a way of trumping what is best for the patient...Denis Van Loan D.D.S.
Comment by Arnon Krongrad, MD on September 15, 2010 at 2:57pm
 Denis, of possible interest: In Defense of Physician Autonomy.