I’m just going to say it.  I’m so sick of people trying to offer me ways to cure my lupus.  Yes.  It would be amazing if there were a cure for lupus.  It would be the best gift in the world to get rid of this disease in my life.  I would love nothing more than to wake up and have no more residual effects from the transverse myelitis.  There is nothing I dream of more than to have a day that I can run again and a day that I don’t feel completely exhausted.

But I know that a quick fix is not possible.  I know that I have a chronic disease and it isn’t going away because I go on a retreat or I do yoga or I eat vegan or I take a special pill.  There is nothing that is going to make this go away and that is what I have to live with.  That doesn’t mean that I am broken or less of a person.  It simply means that I have to deal with what I’ve been given.  That means that I have to learn how to best manage my symptoms and find what is right for me.

I know that people really do mean to be helpful when they offer advice, but it gets tiring.  It is hard for people to understand that chronic conditions are mostly not fixable or something that you get over like a cold.  We have to deal with a lot of pain and uncertainty in our lives and it feels trivialized when people offer up their “cures” as if we somehow have a choice in the matter and we could heal ourselves if only we cared enough, read the right books, did the right exercise or diet fad, etc…

So next time you are talking to someone about their chronic condition try to remember that we have enough to deal with and offer up a hug instead of fixes.  If someone is tired how about staying in for an evening and watching a movie instead of dragging them out?  There are a lot of ways to be kind without being condescending.

A Duke University research team published study results on Monday that revealed the immune system of a patient with both lupus and HIV made neutralizing antibodies, which is essential for an effective vaccine response.

The patient has systemic lupus erythematosus, which causes the immune system to attack the body. The study, published in the Journal of Clinical Investigation, said few people develop antibodies against HIV.

“Over the years we have searched for and now have found one person with SLE who was also chronically infected with HIV to determine if this person could make broad neutralizing antibodies,” Barton Haynes, the director of the Duke Human Vaccine Institute and senior author of the study, said. “We found that the patient did indeed make these important antibodies, and by determining how this immune response occurred, we have enhanced our understanding of the process involved.”

Haynes said he discovered that some broad neutralizing antibodies cross-reacted with tissues. These autoreactive antibodies were kept under control by immune tolerance controls that sense antibodies and prevent them from reproducing.

Haynes’ theory was the immune system labeled the antibodies as harmful and worked to eliminate them, providing an escape mechanism for the disease. The research team theorized that when the body’s immune system is compromised with an autoimmune disease, immune tolerance controls are defective and broad neutralizing antibodies are reproduced.

“The cross-reactivity of the broad neutralizing antibody with dsDNA was very surprising and provided support for the hypothesis that broad neutralizing antibodies are similar to the autoantibodies that arise in lupus patients who are not infected with HIV,” Duke Assistant Professor of Medicine Mattia Bonsignori said.

Bonsignori said that patients with lupus are not immune to HIV and still should avoid contracting the disease.

“Our study of this person with SLE and HIV has been critically instrumental in our understanding of the unusual biology of the remarkable host control of antibody responses to the conserved broad neutralizing sites of the HIV envelope,” Bonsignori said. “We are hopeful that these insights in lupus will aid in our implementation of strategies for designing experimental vaccines capable of overcoming the host tolerance control of broad neutralizing antibodies.”

A new study has been published that suggests that lupus headache do not exist.  I’m going to have to say that I find some of these kind of studies to be a waste of time.  I guess you can say a headache is a headache is a headache regardless of if you have lupus or not.

I, however, have definitely experienced a “lupus headache”.  This headache was, of course, completely ignored by my specialists and I was written off as just having a plain old headache.  Until I had brain seizures.  Then all of a sudden I guess it was a real lupus headache.

Studies like this do nothing to help lupus patients.  It seems rather dismissive by the medical profession to say that it doesn’t exist.  Typical of our wonderful medical system.

The phrase “lupus headache” may be a misnomer, new research suggests. In a prospective examination of 1,732 individuals with systemic lupus erythematosus (SLE), clinician-investigators found a 58% headache prevalence over 10 years. However, only 1.5% of these individuals met the criteria for lupus headache and 96.3% of these cases resolved independently from lupus treatments.

Pain Medicine News – Study Suggests Lupus Headache Does Not Exist.


I have pain and inflammation with my lupus, but I really don’t want to take NSAIDs anymore.  One natural alternative is to use cannabis to treat some of the symptoms of lupus.  I typically try to buy cannabis that is high in CBD as opposed to THC.

Why cannabis?

Cannabis is considered an ideal medication to help Lupus patients cope with the symptoms of the disorder like nausea and pain. It’s also known to be an anti-inflammatory, suppressing certain parts of the immune system.

By lowering the levels of the inflammation-promoting protein interleukin-2, and raising levels of the anti-inflammatory protein interleukin-10, cannabis shows that it may be beneficial for treating autoimmune disorders where inflammation is the main complication.

There is no doubt that cannabis has some medicinal benefits, and helps patients to cope with symptoms of Lupus. On the contrary, medical cannabis is only legal in a number of states. The naturally grown “drug” remains illegal on a federal level, so one should consider the law and its consequences before deciding to self-medicate. Even if you live in a state where cannabis is legal medicinally, always consult your doctor before using cannabis to treat your condition.

What is CBD?

CBD is the abbreviation for cannabidiol, the cannabinoid second only to THC when it comes to average volume. Recently, research has shown CBD to have analgesic, anti-inflammatory and anti-anxiety properties without the psychoactive effects (the “high” or “stoned” feeling) that THC provides. While high THC strains often tout levels of over 20%, generally, CBD levels of over 4% are considered to be high.