I’m just going to give my thoughts on this chapter and subsequent chapters, rather than doing such an in depth summary. If you want to know more then buy the book, and seriously, if you or your loved one has lupus, you need to educate yourself as best you can. For the price of four or five fancy coffee drinks, you can add a valuable reference to your library. It’s worth it.

There is so much we don’t know about lupus, but according to Living with Lupus, there are some things we do know:

• You can’t catch lupus from someone else.
• Lupus is not inherited like hemophilia or male pattern baldness, at least in any way we understand.
• Lupus is not the direct result of any identified environmental toxins.
• Lupus is not the result of a vitamin or mineral deficiency, or the result of a vitamin or mineral overabundance, nor is it the result of any particular hormone or enzyme produced naturally by the body.

One of the things that jumped out at me while I was reading this chapter was the information about the various lupus studies involving identical twins, that has shown that there is obviously some hereditary factor involved. Many identical twins have lupus, but not all, which indicates that there must be other factors involved that can trigger lupus in someone who is genetically susceptible. The authors explain it in this way,

Some researchers call this the “fertile soil” concept: The direct cause that triggers the development of lupus might be thought of as “seeds”; unless they’re sprinkled on ground that offers the right growing conditions, the “fertile soil” of susceptibility, nothing will happen. [p. 35]

So if your loved one has lupus, it may be that they were just at the wrong place, at the wrong time, with the wrong genes.

We also know that lupus appears to be influenced by age, race, and gender. During the reproductive years, the ratio of females to males with lupus is about 10 to 1, while after age fifty the ratio drops to about 2 to 1. Lupus affects African American women three times as often as other women in the same age group.

The rest of the chapter deals with research involving viruses and environmental factors, which I found very interesting. At one point in this section, the authors discuss the difference between the AIDS virus and lupus, which I found particularly helpful. Just recently, a friend of ours brought over a ton of herbal supplements and vitamins designed to boost the immune system, and we have a hard time explaining why these are counterproductive. People seem to have a hard time understanding the difference between someone who has a compromised immune system and someone whose immune system is being suppressed by medication because their immune system is attacking necessary cells and systems.

I would like to know what are some of the factors you think may have contributed to your lupus, or what you think contributed to your friend/spouse’s lupus.

My wife has mentioned everything from a family member’s gout to using hair dye when she was a teenager. What factors do you think may have sown the lupus seeds in your fertile soil?

I’ve finished the second chapter of Living With Lupus: All the Knowledge You Need to Help Yourself by Sheldon Paul Blau, M.D. with Dodi Schultz. Remember, I’m reading the first edition, so if you have the second edition, it may be slightly different. I also found that a good deal of the book is available in a preview at Google Books.

Diagnosis: What Makes the Difference is the title of chapter 2. A lupus diagnosis is not simple and is usually made by a specialist. A primary-care physician will not usually possess the necessary depth of experience with lupus, and often will refer the patient to a specialist. Even a specialist faces a difficult diagnosis. Blau states that the doctor’s conclusions will be based on a combination of three factors:

1. The patient’s complaints. This is difficult because there is a huge overlap with other symptoms related to other connective-tissue disorders, which include rheumatoid arthritis, scleroderma, dermatomyositis, and polymyositis.
2. Established diagnostic criteria. These criteria were developed by the American College of Rheumatology and are known as the ACR criteria. I’ll list these later.
3. Other factors. Diagnostic tests that rely on two concepts, sensitivity and specificity. I learned a lot from these links, but the short explanation of all of it is that there is no diagnostic test that will give a 100% accurate diagnosis of lupus; therefore, a diagnosis must come from a combination of analytic factors.

There are eleven diagnostic criteria for lupus as determined by the American College of Rheumatology. A patient must exhibit four of the eleven criteria, but not necessarily all at the same time. The Lupus Foundation website has a brief explanation of the eleven criteria. I would like to look at them in depth, but I think that may be better accomplished with a separate post.

According to Dr. Blau, there are other indications that may lead a doctor to suspect lupus:

…there are a number of other signs, symptoms, and test results that, if present with others, will lead an experienced specialist to consider the possibility that a patient may have lupus. Some are considered more significant than others. Among them (the first two were included in the earlier, 1970s criteria but were later dropped). [p. 30]

These other indicators are as follows:

• Hair loss. 25% of all lupus patients experience some degree of hair loss.
• Raynaud’s phenomenon. Dr. Blau mentions that there are varied estimates of the percentage of lupus patients who also suffer from Raynaud’s phenomenon, but I found an article from the Cleveland Clinic that puts the value at approximately 33%.
• Free DNA. Apparently, high levels of freely circulating DNA is often a result of the cell destruction caused by the antibodies in lupus. I really don’t understand this very well, but I did find an article if you happen to be interested.
• High sedmentation rate. This the sinking velocity of red cells within a quantity of drawn blood, and is often referred to as the “sed rate“, one of those things I’ve heard mentioned for years, but had no idea what it meant until now.
• Other antibodies. This refers to the existence of autoantibodies that attack the patient’s own cells, tissues, and organs. Specific tests can determine what types of autoantibodies are present and what substances they target.
• Serum complement. This refers to a finite amount of proteins, referred to as the complement system, that act as part of the immune system. Since the proteins are drawn to areas where antibodies are active, a low serum level in the general circulation can be indicative of lupus.
• Rheumatoid factor. The rheumatoid factor is a blood test used in the diagnosis of rheumatoid arthritis.
• False-positive AIDS test. According to VirusMyth.net, SLE is one of the identified factors that can cause a false-positive result on the ELISA test for the HIV antibody.

The chapter ends with a discussion of how lupus can be confused with certain disorders, like the childhood illness commonly known as “fifth disease” and technically known as erythema infectiosum. Lupus is known as the “great imitator” because of the difficulties involved in reaching a diagnosis. Previously, syphilis held this title, which is ironic, since a false-positive test for syphilis is one of the eleven criteria for a lupus diagnosis.

I know that my wife’s diagnosis at age 15 is remarkable considering how many people suffer for years, possibly decades, with lupus before receiving a positive diagnosis. This leads me to some possible areas of discussion for this chapter:

• How long did it take for you or your loved one’s lupus diagnosis?
• How many of the eleven ACR diagnostic criteria for lupus do you or your loved one exhibit?
• What were or are some of the “roadblocks” you or your loved one have encountered while trying to get a diagnosis?

I’ve read the first chapter of Living With Lupus: All the Knowledge You Need to Help Yourself by Sheldon Paul Blau, M.D. with Dodi Schultz. The last time I looked at the Amazon link it had a used copy for a penny. I’m reading the first edition, so if you have the second edition, you can let everyone know if there’s anything new.

Chapter One of the book is called In Their Own Words: How It Began. In this first chapter, Dr. Blau introduces seven women and gives a brief explanation of how they first discovered that they had lupus. Each of the women have a very different initial experience, but it is usually as Dr. Blau says,

The first experience with lupus is often recognized only in retrospect – seen at the time as something else or, often, simply an enigma. Only when lupus is finally suspected and diagnosed may it be clear that events that took place months or even years earlier were actually – or, at least, possibly – signs and symptoms of lupus, or that seemingly unrelated incidents may actually have been connected.

I know that my wife has recently been writing about her childhood and her initial lupus diagnosis, and she now believes that many of her early medical incidents were lupus related.

The stories of the seven women continue to develop throughout the book. Here are their names and initial symptoms:

• Anita – pleurisy
• Connie – rheumatoid arthritis, thrombophlebitis, mouth ulcers, vasculitis, and an allergy to sulfa drugs
• Eileen – false-positive test for syphilis, sulfa drug allergy, and acute polyarthritis
• Elizabeth – fever, fatigue, and a minor fracture that would not heal
• Jan – changes in menstrual patterns, joint pain, rashes, hair loss, and Sjorgren’s syndrome
• Lisa – sunlight sensitivity and rashes
• Nancy – arthritis and Raynaud’s phenomenon

That’s the first chapter of the book. What are some of your reactions, or can you share some of your initial experiences with lupus?