Lupus – The Mind of an Autistic Savant

Autism 2015, a year in review

Happy New Year!

I’ve lost count on the potential causes of autism because they pop up daily.

One that resonated with me over the past year was the discovery that mothers with Lupus are very likely to have an autistic child.

The reason that one resonated with me is because I’m autistic, I appear to have Lupus, and I realized that what my mother referred to as her “eczema” was probably Discoid Lupus or Subacute Cutaneous Lupus.

That made sense to me.

This morning, the first day of 2016, I received my daily Google Alert list of autism articles and one caught my attention.

It’s by a very good writer, Emily Willingham, who writes about autism and publishes in the Forbes magazine.

This particular article was criticizing Malcolm Gladwell’s remarks about the link of autistic men and child pornography.

I’m an autistic man but I’m not into child pornography, and the thought of that disgusts me.

The connection does have some scientific merit on the surface if one considers that many autistic individuals have Emotional IQ’s (EQ) much younger than their physical ages.

As a scientist, I’ve concluded that my Emotional IQ fluctuates between 13 and 18 years old most of the time. All that means is that I am super naive and I assume that everyone is telling me the truth; at least until they prove otherwise.

The article referenced autistic men with Emotional IQ’s of around 10 years old, and the hypothesis is that those men were sexually interested in children of around the same age.

I’ve done some research in the past on childhood sexual abuse and what I synthesized is that the majority of adult sexual abusers were more into ‘power’ over their victims than attempting to have an ‘intimate relationship’ with them.

That makes sense to me.

Furthermore, if one analyzes the average sexual awakening in a young boy, it’s usually around the age of 13 when they reach puberty. And when that happens, assuming it is a heterosexual boy, he’s generally interested in big boobs of older women, not flat chested little girls! 🙂

Consequently, I think the above premise should have been raised when psychoanalyzing alleged adult autistic males who happen to be into child pornography.

However, near the end of the article Ms. Willingham cited another autism ’cause du jour’ of 2015 which I remembered reading about, ‘circumcision’.

That one had me really scratching my head when I read that pseudo-scientific report.

As I recall, the hypothesis of that over-the-top cause of male autism was the result of the pain experienced during the circumcision process which altered the genetics of the brain. Really? 🙂

In the spirit of starting off the new year, let me add my theory and autism ’cause du jour’.

The cause of autism is the interbreeding of alien lizards from an oval planet with humans on a tiny round planet.

As ‘The Story of Leonard’ unfolds, I hope to make a valid scientific case for that hypothesis… 🙂

[To be continued…]

How long does it take you to get a doctor’s appointment?

I live in Mexico, about an hour and twenty minutes south of the border with San Diego, CA.

I use two US medical systems, private healthcare and the Veterans Administration Healthcare System (VA). I also use the Mexico medical system, basically paying up front to see a doctor out of pocket.

On average, it takes me at least two (2) months to get an appointment with either my US primary care physician or a US medical specialist such as a rheumatologist. It usually takes me longer than that to see a doctor at the VA, and it’s next to impossible to see a specialist at the VA unless some lab report comes back with a major red flag or you’re near death. 🙂

Since I’m on Medicare due to being disabled, I’ve been using what they call the Medicare Advantage Program for the last five years. That program is basically an HMO type process that does have some perks, but also has a lot of downsides. My co-pay for seeing my primary care physician is $15.00 and if I’m referred to see a specialist such as a rheumatologist my co-pay is $35.00.

Over the last sixteen years, I’ve been seeing a lot of neurologists for what I thought I had, Multiple Sclerosis (MS). In October, I figured out that I probably have primary Lupus and secondary Sjogren’s Syndrome and subsequently I’ve seen two rheumatologists, one in the US and one in Mexico.

They have differing opinions from one another. The US doctor brushed me off as not being ill with anything and the Mexican doctor determined that I probably do have primary Lupus and secondary Sjogren’s Syndrome. My lab tests are the issue. I saw them both twice, a total of thirty-five (35) minutes with the US doctor, and a total of five (5) hours with the Mexican doctor.

I’m a big believer in second and third opinions, so I decided to see a third rheumatologist to get an additional opinion.

I found what appears to be a really knowledgeable rheumatologist in Tijuana, Mexico at a very prestigious private hospital. I did a lot of research on this individual, and it’s impressive.

The title of this post is “How long does it take you to get a doctor’s appointment?” I should have added, “How much does it cost you to finally see that doctor?”

I called the office of the Tijuana rheumatologist this morning and asked to make an appointment. The receptionist asked me when would I like to come in and my response was “next week.”

My appointment with this doctor is at 11:30 AM this coming Monday, January 4th.

I suspect the fee to see this doctor the first time will be the usual which is mandated by the federal government of Mexico. The usual fee for the first visit is $700 MXN pesos and subsequent visits are $500 MXN pesos.

At this very moment in time with the US dollar to Mexican peso exchange rate, that equates to $41.00 for the first visit and $30.00 for the second visit.

The co-pay for the US rheumatologist was $35.00 times two which equals $70.00, and that was for a total of thirty-five (35) minutes of not much help nor advice.

Oops! I made a boo-boo!

That US rheumatologist (she) did give me some advice. She told me to go see someone else and recommended that I spend $30,000.00 to get a thorough evaluation at the Mayo Clinic in Arizona…

Lupus ANA test, positive or negative?

One of the first tests that a doctor will order when a patient is suspected of having Lupus is an antinuclear test called the ANA.

That test studies serum (blood etc.) to see if there are any active autoantibodies doing battle with antigens.

There are two methods used to conduct this test, ELISA which is pretty much of an automated process, and the old fashion method called Immunofluorescent Assay. The old fashion technique involves an experienced lab technician to look for those little culprits under a sophisticated microscope.

The ELISA test is considered more sensitive and specific, and most importantly it is really quick and cheap to do.

There are two types of ELISA tests, quantitative and qualitative. The usual test that is ordered is the ‘quantitative’ which gives either a ‘positive’ or ‘negative’ result. A ‘qualitative’ test will actually list the ratio of any positive result. They both use the metric of ‘dilution’ to analyze the results.

Hence if your ELISA ANA test is negative, most doctors will stop there and suggest that you may have some other ailment in lieu of Lupus.

Unfortunately these tests are not perfect nor are they regulated per se by the FDA.

In fact, there are numerous manufacturers of ELISA Kits all vying for business with medical laboratories.

Each of the different manufacturers have their own design protocol for creating an ELISA Kit supplying the supposedly correct antigens to be used against a patient’s serum that may or may not contain autoantibodies. Remember, the goal is looking for too many autoantibodies which may be causing havoc in your body.

The American College of Rheumatology which is the pseudo-governing body of standards for rheumatic diseases recommends using the old fashion test, specifically the Indirect Immunofluorescent Assay (IIFA). They refer to it as “the gold standard.”

This test requires an experienced lab technician to analyze the patient’s autoantibodies against targeted antigens. The semi-automated ELISA test takes around 90 minutes and the IIFA test can take anywhere up to 3 hours to complete. Furthermore, most reputable labs using the IIFA will have at least three lab technicians verify the results before committing to them.

In a research paper published by the Cleveland Clinic in July of 2015, they concluded that although the ELISA test is more sensitive and specific, the IIFA test with a positive low titer ratio of 1:40 is what should be used in evaluating a patient for Lupus.

After careful analysis of varying ELISA Kits tested against a sample population of patients with a concrete diagnosis of Lupus, they discovered that the ELISA test could actually provide a false negative.

In other words, a higher sensitivity and specificity does not always provide an accurate result.

Furthermore, if one peruses the Lupus Support network and reads the comments by a multitude of individuals, many have reported that every six months their ANA test will revert to either a positive or a negative. The implication is that sometimes an ANA test is only relevant during an active disease state.

Should the reader of this post still be in the process of being evaluated for Lupus and an ANA test has been done, first check to see if it was an ELISA test, then whether or not it was a ‘quantified’ or ‘qualified’ test.

If it was an ELISA test and it came back negative, use the report referenced in this post with the link above and show it to your rheumatologist.

Ask your doctor to request an Indirect Immunofluorescent Assay (IIFA) test be conducted to see if there is a positive result at a dilution of 1:40.

In order for either the ELISA ANA test or the IIFA ANA test to be of value, it is essential that the patient is not currently taking any kind of immunosuppressant medications such as Prednisone or Aspirin.

[To be continued…]