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A book for every library, “The Lupus Encyclopedia”

The Lupus EncyclopediaI received “The Lupus Encyclopedia” for review and was initially a bit overwhelmed by it’s length. But as I turned page after page, I was pleased to read a very well-written and comprehensive book about a very complex topic and any preconceived notion that this was the lupus version of “War and Peace” because of it’s 800-page length, was set aside. “The Lupus Encyclopedia” is carefully-researched, easily-understood and comprehensive book. It is as it claims, an ENCYLCOPEDIA.

In very logical fashion and always with assertions and explanations backed up with facts, Dr. Thomas addresses the very complex topic of lupus and autoimmunity and succeeds, in stellar fashion, in making it understandable. There have been other books written that focus on lupus, but this was more thorough coverage of lupus and discussion of several other major autoimmune diseases. Because autoimmunity is so complex and Dr. Thomas explains it so well, his grade ought to be an A+.

After explaining the structure of the book and suggesting ways to use use it, he begins discussion with an explanation of how lupus received it’s name and proceeds with a chapter on diagnostic tests for lupus. Every topic that you could conceivably have a question about, is covered and indexed well so you can find everything easily.

In reviewing this book, I found that ‘all things lupus’ can fit between the front and back covers of one book: “The Lupus Encyclopedia.” Dr. Thomas has a gift for making the difficult to understand-undestandable. But, there are many areas of lupus and autoimmunity research that aren’t understood; in those areas he does not pretend to know the answers.

There is much discussion of the role of Complementary and Alternative Therapies in the treatment of lupus. He surely did his homework, covering everything lupus.

He gives caregivers advice, talks about how patients can talk to their physicians, gives resources for patients who need assistance, sometimes financial. Dr. Thomas doesn’t just list questions patients ought to ask their doctors, he gives the ‘whys,’ they should ask them and discusses how important it is that to establish a trusting relationship with your physician. He discusses the symptoms patients might look for and how you might monitor them at home. He gives patients suggestions about empowering themselves, how to critically think for themselves; without being their own doctors. Caregivers can learn a lot from this  chapter on “Practical Matters.” If you could can have only have one book in your library about lupus,  “The Lupus Encyclopedia” might well be it.

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How can I be affected by lupus?

Because all immune activity is so varied and each individual's immune response is just that-SO INDIVIDUAL, responses to lupus may be so varied. Some people have activity and flares of this illness often or all the time while others rarely have flares. Often there is an identifiable trigger. In my case it's stress and I notice a direct correlation between those horribly achy joints, and stress. This video tells how various people are affected and the differences they may have in symptoms and triggers-and how their attitude makes a difference in their coping with this illness

About Lupus

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“You’ve got lupus!”

“I feel like I’d been kicked in the chest by a horse,” were the EXACT words I used to describe what I was feeling to my doctor. He ran every test known to God and man, and then a few more, and still came up empty-handed. Then one day, he had a suspicion of something, ran an EKG confirming an incredibly fast heart rate, my respiratory rate was fast, and my chest x-ray only confirmed what he suspected. I had a pleural effusion; from what he didn’t know, but the instructions were, “meet me at the hospital, do not go home and dilly dally and pack a bag, do not pass ‘go’ do not collect $200! I think you get the gist that he felt that my getting to the hospital was urgent!

Yes, I had a pleural effusion and I don’t know how much fluid was removed from the lining (pleura) of my lungs. Some of that fluid was cultured and from that the docs received their diagnosis. You have lupus. I didn’t know it, but my life had changed.

That’s how I received my diagnosis, and you? I’d love for you the share, with me and others who read here, how you received your diagnosis and what symptoms you experience most.

There are so many ways in which lupus manifests itself and in this post, we’ll concentrate on lupus involvement of the lungs. Patients may develop pleuritis, the most common manifestation of lupus in the lungs. Pleuritis is inflammation of the pleura, the external lining of the lung.

The most common symptoms of pleuritis are shortness of breath and a SHARP PAIN ON INSPIRATION. Sometimes, fluid accumulates in the pleura: pleurisy; also a very painful condition found in @ 50 % of patients with lupus.

Another condition, PNEUMONITIS is an inflammation of the lung tissue itself; inflammation that doesn’t involve the pleura. This only makes sense, because lupus is a disease of inflammation.

The cause of pneumonitis is often bacterial or viral or fungal, but most commonly bacterial or viral. When someone has pneumonitis and their lung tissue has accumulated  fluid and the lung cells exude this fluid, the condition is called pneumonia. The fluid is usually called phlegm and contributes to the signs of pneumonia.

Vasculitis is an autoimmune disease affecting the blood vessels.  When vasculitis causes lung problems, it is because the inflammation involved in vasculitis, ‘cuts off’ necessary blood supply (and blood carries oxygen and nutrients) to the lungs.

Multiple sclerosis is an autoimmune disease that affects lung function: the muscles involved in respiration are weakened and because of this weakness of the lung muscles, pneumonia is common in multiple sclerosis patients.

Because lupus patients are often immunocompromised, either BECAUSE THEY HAVE LUPUS, or for treatment they receive for their lupus, lupus patients can develop fungal infections of the lung and tuberculosis.

Pulmonary hypertension is another manifestation of pulmonary involvement of lupus as is Shrinking Lung Syndrome. Both involve considerable shortness of breath. For these two complications of lupus there is treatment, but not cure.

There are more pulmonary manifestations of lupus AND of autoimmunity but space limits me to coverage of the complications I have noted.

Bronchi, bronchial tree, and lungs.

Bronchi, bronchial tree, and lungs. (Photo credit: Wikipedia)

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Lupus can involve the Nervous System

No discussion of lupus and the havoc it wrecks on the human body would be complete without discussing lupus and our nervous systems. Since lupus can affect all organs and systems, our nervous system are also ‘targets.’

Our nervous systems are complex, so, I’ll divide then into 3 component parts. There is the peripheral nervous system which governs our arms and legs and feet. It contains a network of nerves that work to connect our brain (Central Nervous SYstemO with the rest of our body, sending messages to the rest of our body as to how to act or react to stimuli.

The Autonomic Nervous System, (ANS)  or involuntary nervous system controls thins like our heart rate, respiratory rate, how much we sweat. It has any number of functions. Basically, our autonomic nervous system acts independently of us. Think of it, if we had to have a discsusion with our automatic system EACH time our heart was taxed and we had to convene a Congress of what to do about it,  the threat would have already passed and the reaction to this would have been an Intricate Lee. very ineffectively. So, the Autonomic Nervous System does the work for us on ‘auto’pilot’

Lastly there is the Central Nervous System. The Central Newvous System  (CNS). Ir is comprised of the nerves in the brain and spinal cord. When the nervous system of people who have lupus is affected, people experience ugh a wide variety of symptoms which I’ll try to break down to systems. The effects that lupus has on the CNS are the most known, but not always the most devastating.

When lupus affects the Central Nervous System,  people may experience headaches, confusion, fatigue or depression. You might also see stroke, cognitive problems, vision difficulties and mood swings. Those are pretty vague symptoms and could be caused by a variety of conditions, so if you have these symptoms, you’ve likely had at least one physician question your mental status. CNS involvement can be a difficult diagnosis to make because often the symptoms are vague. But CNS lupus can present with CNS vasculitis, a potentially life-threatening medical emergency.

When lupus affects the Peripheral Nervous System, numbness and tingling or other different sensations may manifest in your arms and legs. There can also be ringing in the ears (even though tit was told to me, that “you’ll get used to it” and it was just a temporary nuisance. 15 years later, though, it progressed into a permanent, rip-roaring buzz-saw present 24/7, that nothing can be done about.

Last, but not least is involvement of the Autonomic Nervous System. What symptoms may be seen? Inflammatory  symptoms of organs that are heavily innervated automatically. For example, the heart rate, instead of being strong and regular, may be weak and irregular.. If that’s the case, you’d see confusion, because the brain relies on a regular flow of blood-carry oxygen, WHICH IT IS NOT GETTING. There might be numbness or burning for the same reasons.  Probably the example of ANS involvement of which we’re familiar, is in Raynaud’s phenomenon.

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“We’ve just been introduced…”

Finally, a diagnosis, a reason for years of unexplained aches and pains. It’s not time to get out the party hats, but now that you have a diagnosis, there are more treatment options. However, before telling people that you have an abnormal immune system, shouldn’t you understand what’s normal?

Our immune systems defend our bodies from disease and one of the immune system’s major players is a protein called an antibody. Antibodies rest in constant surveillance for foreign invaders, or antigens. Antibodies attach to antigens and destroy them like
pac-men.

Occasionally, this destruction occurs when antigens aren’t present, so the antibodies attack the body’s own tissues, it’s own cells. This is called autoimmunity; in short, a failure of our bodies to recognize itself as ‘friendly.’ If the attack is on the heart, you may experience lupus pericarditis, if the attack is on the lungs, you may have lupus pleuritis (the largest pulmonary complication of lupus) or pulmonary hypertension. Attacks like these, against the body cause massive inflammation and tissue or cell injury, which we call lupus.

There are a lot of symptoms of lupus, but most are the result of these: inflammation and injury to tissue and cells. The inflammation of lupus is often measured by blood tests and is noticed by the massive inflammation that accompanies lupus and tissue cell injury also accompanies this inflammation.

Approximately 70% of lupus cases are neither drug-induced, neonatal nor discoid. They are systemic (meaning they involve the whole body) and are represented by the name systemic lupus erythematosus (SLE).

Discoid lupus, or cutaneous lupus, is noted to have heavy skin involvement. But eventually, 40-70 % of discoid lupus sufferers develop SLE.

It used to be thought that women with lupus could not and should not conceive. Now, it is possible to conceive and give birth; though the pregnancy is thought to be high-risk.

When pregnant women have lupus, on occasion their autoantibodies travel through across the placenta and through the fetal circulation; attacking the cells of the fetus. This is called neonatal lupus and children with neonatal lupus are at risk for premature birth and heart block.

Drug-induced lupus, as the name suggests, is often caused by certain medications. Example of medications that might cause drug-induced lupus are, dilantin  (epilepsy). Surprisingly enough, some of the medications used to treat lupus, cause drug-induced lupus. Medications used to treat other chronic illnesses can cause drug-induced lupus.

The video below is the best explanation of what lupus is, by a reputable organization. So, if you have only a few minutes to to explain to your family why you have the symptoms you do, this ia a must, not-withstanding the commercials.

What is Lupus?

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