Why remove canned tomatoes from your diet?

We all have heard how healthy tomatoes are for us - particularly men,  who need protection against prostate cancer. But did you know that those tomatoes are not healthy if they come from cans containing  bisphenol A (BPA)? Acidic foods like tomatoes, in particular, cause BPA to be leached into the food.

But why be worried about BPA? It is a synthetic estrogen which has been linked to many serious health hazards. Dr. Frederick Von Saal , an endocrinologist who studies this chemical at the University of Missouri, says he won’t go near canned tomatoes. He states “you can get 50 mcg of BPA per liter out of a tomato can, and that’s a level that is going to impact people, particularly the young.”

Thus, be sure to eat only fresh tomatoes, bottled or ones found in tetra paks until the BPA is removed from cans. And that could be years!

In the next blog, find out all about the hazards of BPA.  The politics surrounding food safety in Canada and the US will shock you.

Nutritional Tips

My New Year’s resolution is to take better care of myself. It just so happens that I am a member of the US Tennis Association and I read this great article in the January/February Tennis Magazine- “Food For Thought - 20 Things You Need to Know about NUTRITION”. I decided to paraphrase the article for the women in my online lupus support group but I realized that I am not reaching that many people so I decided to share these tips with you, too.

Having lupus is frustrating because so much seems to be outside ones control! However, our diet is something we can change to improve our health.  As Dr. Sasha Bernatsky mentioned in the article in the Prevention Magazine - exercising, eating well and maintaining a healthy weight are important ways for us to live healthier lives.

With the medications (especially steroids) many of us take and the disease, itself, we face greater challenges with weight control and avoiding osteoporosis.

Diet Affects Brain Function

Yes, while most of us are not like rats, we can learn something from experiments conducted on them. In this case, rodents fed a typical American diet developed inflammation of the hypothalamus.  This is the part of the brain which regulates hunger, thus causing them to become hungrier and gain weight. 

What is even more remarkable - the rodents’ brains developed changes typically associated with strokes and MS!

The Right Breakfast Fights Hunger All Day

I know we have all heard this one and I am one of those people who just does not feel like eating breakfast. But now that I understand the reason why I need to eat breakfast I am changing my ways.  

A study cited in the Journal of Obesity showed eating a higher protein breakfast (like non fat Greek yogurt, cottage cheese or egg whites) stimulates a lower appetite later in the day compared to people who ate no breakfast or milk and cereal. This was proven by doing brain scans on the part of the brain which controls appetite.  

And I did follow this advice and have been eating non-fat Greek yogurt and berries (from the freezer section of Trader Joes) for my breakfasts for the last 3 weeks. I don’t think I have lost weight but I do have more energy throughout the day.

Bacteria is good for your health

And speaking of having yogurt for breakfast, it contains the probiotics which is the healthy bacteria. Probiotics fight inflammation, boost immunity and lower body fat. 

A recent study published in the European Journal of Clinical Nutrition found that people who took probiotics supplements (particularly lactobacillus gasseri) had a 4.6 % reduction in belly fat and 1.4% reduction in body weight after just 12 weeks. The people who did not receive the probiotics saw no reduction in body weight.

Yogurt contains good bacteria as long as the container says active culture on it.  However, it doesn’t contain as much bacteria as the probiotic supplements. If you are buying the supplements, remember to keep them in the fridge.

Vitamin D Supplements

 

Not getting enough Vitamin D? Lack of Vitamin D has been linked to autoimmune disorders, certain cancers, increased body fat and decreased muscle strength. And don't forget Vitamin D is needed to absorb calcium which we need to ward off osteoporosis.

How much Vitamin D is enough? My distinguished rheumatologist told me to take 2000 international units a day. But be careful, it is possible to take too much which can cause kidney stones and heart rhythm problems along with other toxic effects. 

The Mayo Clinic suggests that taking more the 4000 units a day increases the risk of adverse affects. The literature also suggests that the toxicity levels can be lower for people with kidney or liver problems.

The advice for lupus sufferers to stay out of the sun is not just for those of us who have sun sensitivity and skin cancer. According to one of the researchers at the 2010 International Lupus Symposium, sunlight stimulates the immune system and can cause a lupus flare.

For those of us whose family and friends think they are getting enough Vitamin D from the sun, there is a study that disputes that. A study of Hawaiians showed those who spent 20 hours a week in the sun, including 10 hours without sunscreen, had low Vitamin D levels. And a study published in the Journal of Endocrinology and Metabolism found that nearly 60% of Americans had too little Vitamin D in their blood.

Vitamin D3 is what you need as it is the best absorbed; it is considered the most natural since D3 is what is created when sunlight hits your skin; and it's the most shelf stable too. D2 is more toxic and D is poorly absorbed. Some calcium supplements do not have D3 although this is becoming less and less prevalent. As always, check the label!

Calcium helps us to lose weight

If you have not been really diligent about taking enough calcium for your bones and teeth here is another reason to inspire you to stick to this mineral regime. According to a study published in the British Journal of Nutrition, they found that obese women taking 1200 mg of calcium lost 12 pounds versus 2 pounds in the control group (taking a placebo)  when following a low-calorie diet for 15 weeks.

The recommended dosage for women 19-50 is 1000 mg a day and 1200 for women over 50 according to the American National Institute of Health. Don’t take more than 500 mg at a time or it won’t be absorbed. My rheumatologist and family doctor have told me to take 500 mg of calcium with vitamin D three times a day with meals. The vitamin D taken with calcium helps absorb the calcium. Look for calcium citrate as it is better absorbed than other types of calcium.

Vitamin C Helps Burn Fat

Yes, we all know that vitamin C helps prevent colds. But did you know that vitamin C is essential for the production of carnitine which helps turn fat into a useable food source? A study done at the Arizona State University showed that men with low vitamin C levels burned 25% less fat during a treadmill test than those with adequate vitamin C levels. The vitamin C affect also applies to burning fat when at rest.  Hence, make sure to eat those citrus fruits, broccoli and peppers for their antioxidants and their effect on burning fat!

  

Why Dark Chocolate is a Super Food

This is fantastic news for "chocolate-holics" like me! Chocolate consumption has been linked to reduction in heart attacks, strokes, blood pressure, inflammation and bad cholesterol.

One study showed that women, who ate dark chocolate for a week, dropped their bad cholesterol (LDL) by 6 % and increased their good cholesterol by 9%. And a study of heart attack survivors, who ate dark chocolate twice a week for 2 years, cut their risk of dying of heart disease 3 fold.

Be sure to eat chocolate with 70% or more cocao to get the most antioxidants. As we know, chocolate is not diet food but we can say now with certainty that it qualifies as health food. The challenge, for those of us who are addicted to chocolate, is to limit ourselves to no more than 1 ounce a day.

Good luck and enjoy a yummy super food!

Spices Are a Secret Weapon

Herbs and spices such as oregano, cinnamon, turmeric, black pepper, cloves and garlic powder increased post-meal blood levels of antioxidants, lowered insulin levels and reduced unhealthy blood fats by 30% according to a Penn State University study. In other studies, these seasonings have been shown to rev up the metabolism and boost the sense of fullness.

What I think is incredible is that many herbs and spices are more potent sources of antioxidants than fruits and vegetables! So try to get an extra punch of cancer prevention by adding herbs and spices to each meal!

Food Can Fight Pain

Ginger, berries, and extra virgin olive oil possess anti-inflammatory properties. Ginger contains the same pharmacological properties as ibuprofen. A study of people with osteoarthritis of their knees that took ginger extract 2X per day experienced less pain and took fewer pain killers than the placebo group.

Sleep Matters a Lot

Lack of adequate sleep increases inflammation, increases the hunger hormones, increases the risk of depression, type 2 diabetes, and heart disease. To maximize your sleep, establish a regular sleep schedule (including weekends.) Make sure you sleep in a dark, quiet room with the temperature between 54 and 75 degrees F.

Light is the most important external factor that can affect sleep according to the Harvard Medical website. Light makes it difficult to get to sleep and also disturbs our internal clock controlling sleep and wakeful periods. 

If your room is not pitch dark when you sleep how about trying using a sleep mask and see if this helps you get a better sleep. I have experimented with this and I have been sleeping better although my cheap mask does fall off sometimes.

I have to say that I sleep a lot and because I often feel tired in the morning I have existed without an alarm for the about a decade. However, I did decide to try the more regular sleep pattern and I have been going to bed at the same time (give or take an hour) for the last month or so. The alarm clock wakes me in the morning now. I figure if I am tired in the morning I can always go back to bed and have a nap in the afternoon. I force myself out of bed after I hit the snooze buttons a few times. The amazing part is that I don’t need those naps often.  

I am accomplishing so much more now and feeling good about it. I would have never thought in a million years that I could get up and go to Zumba classes at 9 o’clock on Saturday mornings.

Oh and by the way my rheumatologist was probably right about the sleep problems. I don’t have the pain I once had from fibromyalgia. Well, I do knock back the medication that helps me sleep but that it a whole other blog!

The Elusive Diagnosis

The Elusive Diagnosis

As I said in my first blog,  it took me years to be diagnosed. It was an incredibly frustrating experience. I knew that my brain was not working properly for a long time but no one believed me - at least not the medical profession.  My family and friends knew something was very wrong. Even my employer knew that I was no longer able to function at my job. 

Some of the doctors thought maybe I had a sleep problem and fibromyalgia but basically there was nothing seriously wrong. After so many doctors telling me it was all in my head, finally even my husband started to doubt me. I, too, began to wondering how I could have all of these very strange symptoms yet the doctors said nothing was wrong with me.

By this time, I had had it with doctors. I vowed to never go back to another doctor after the final straw with a psychiatrist. He didn't think I could possibly be sick because I looked too good ( and he said something like attractive which doesn't bode well for his professionalism.) Being told that one can't be sick because they look well is a common complaint of people suffering from lupus. And beware, if you know too much about medical terms and search the internet,the doctors will also suspect that you are one of those people who is faking it.

The vast list of doctors, tests, and medical conditions I am going to mention, may be quite confusing for you. Thus please refer to the list of definitions following this blog if you need more explanation.

After seeing four rheumatologists, two cardiologists, two internists, two neurologists, two visits to a MS specialist, an ears/nose specialist, a gynecologist, two gastroenterologists, two naturopathic doctors, two allergists, numerous clinic doctors, two sleep specialists at the University of British Columbia (UBC)  Hospital Sleep Clinic, an infectious disease internist, two psychiatrists, and a neuro-ophamologist ... - I CALLED IT QUITS. I was almost convinced that I was the one who was crazy and not the doctors who could completely ignore my symptoms.

However, I did give it one last effort to be cured of my supposed problem (a hypochondriac) by visiting a psychologist at the University of British Columbia  (UBC) Anxiety Clinic. It was this psychologist who observed one of my episodes of altered consciousness. She told me that I had something far more serious than fibromyalgia and depression and I needed to see a neuropsychologist at the university. I told her I would rather not know if I had MS or something like it but she talked me into getting tested by a neuropsychologist.

Lo and behold, it was this neuropsychologist who picked up on me having lupus. She told me I looked like the CNS  (central nervous system) lupus patients she treated at  UBC Hospital. She said that I needed to be well -treated for depression before she could do the testing. (I had been taking antipressants to no avail but she thought I should be given higher doses). Depression goes with CNS Lupus because the blood supply to the brain is reduced by inflamed blood vessels. 

She did write a letter to my family doctor suggesting that I be tested for lupus and be referred back to rheumatologist who treated lupus patients with central nervous system disorders (CNS).

My family doctor started lupus testing right away and she referred me to a rheumatologist. Because there was a significant delay in being able to see the CNS specialist she also referred me to see this other rheumatologist. He was one who wrote good reports and was well-liked by her patients.

I am quite sure that if I had been in the United States I would have died many years ago. There is no way I would have been allowed so much access to the medical system. Some of you may think if I had gone to the US it would have been found much earlier. However, I was aware of a special clinic for vasculitis at John Hopkins Medical clinic and I did try to make an appointment there. My case was reviewed but they did not think I would benefit from seeing them because they did not think it was clear I had vasculitis.

Well, I can tell you it does make a big difference which doctor you see. The first rheumatologist  I saw after the positive lupus tests told me that he could not treat me without me undergoing a brain biopsy. My neurologist said the test was only 50% accurate, risky, and that I would receive the same treatment whether I had vasculitis or CNS lupus. When the rheumatologist told me that I just had to accept that nothing could be done for me, I changed to the rheumatologist with CNS lupus experience.

I am so lucky to have this rheumatologist. At first I was reluctant to go back to him as he had told me that I did not have fibromylagia and it was simply a sleep problem. His comments about being out of shape because I  had given up  running made me angry, too. However, he was the one who knew that MRIs could be misread. He knew the best radiologists for reading MRIs of the brain were the specialists at Vancouver General.  Hospital. He arranged for the VGH radiologist to read my two MRIs that I had paid privately to have done. 

It was incredible that the first two MRIs taken about 5 years before had been misread and those lesions had been on my brain for years.  I had another couple of MRIs done within a few months and the doctors noticed the number of lesions were increasing. One count was at more than 25 lesions. These lesions were places in my brain where I had been deprived of oxygen and the white matter of my brain had died.

I am a believer in brain plasicity - that is the brain's ability to develop new pathways to work around the damaged parts. The neurological testing I have undergone over the last several years doesn't show a significant recovery. However, I am not getting worse and I am just really greatful that I am doing as well as I am!

In my next blog, I am going to talk about the ways that lupus is diagnosed and why my situation is not that uncommon. 

DEFINITIONS:

internist - a doctor with 3-4 years postgraduate training who focuses on the prevention and treatment of adult diseases

rheumatologist-  an internist with an extra four years of medical training to treat arthritis, certain autoimmune diseases, muscle skeletal pain disorders and osteoporosis. 

 

cardiologist - an internist who specializes in treating heart and blood vessel problems

gastroenterologist - an internist that specializes in the treatment of disorders of the gastrointestinal tract

MS specialist - a neurologist who specializes in treating people with Multiple Sclerosis

neurologist - an internist who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves and muscles.

neuro-opthamologist- practises the subspecialty of both neurology (brain and nerves) and ophthalmology (eyes) to treat a variety of eye disorders caused by or associated with neurologic diseases, such as multiple sclerosis, strokes, and brain tumors.

fibromyalgia - a widely misunderstood condition that causes widespread pain and fatigue 

neuro-psychologist-  a psychologist with specialized training to test the structure and function of the brain as they relate to psychological processes and behaviors.

vasculitis - a disease that causes inflammation of the blood vessels

MRI ( magnetic resonance imaging) - a test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body

Living well with lupus

I am a lupus survivor named Sue. For the last nine years, I have been on medical leave from my job as a financial manager with the provincial government in Vancouver, Canada. I am enjoying my life and I feel very fortunate to be as healthy as I am.

My story is an interesting one because I have a very rare form of lupus called  CNS or NP lupus which affects my brain. Unfortunately, it took many years to diagnose and treat my disease so I have been left with some cognitive problems. A lot of the time, it is not apparent that I have language and concentration problems although I tend to jump around a lot. However, mental fatigue can affect me at the drop of a hat and my mood affects my motivation. (I am on the end of the scale for procrastinators). Fortunately, with much patience, I can still communicate relatively well in writing.

My purpose in writing this ongoing blog is to share my vast knowledge and experiences with lupus. I have had the privilege of sharing stories with members of lupus support groups and I have been a board member of a dynamic lupus society for years. During my time with the BC Lupus Society I have had the privilege to attend lectures given by some of the most prominent lupus doctors in the world.  Luckily, I have had access to excellent doctors and lupus researchers to discuss many facets of lupus. Because I expect to be able to understand things, I am very persistent in getting answers.

On this blog, I am going to provide tips about living well with lupus from a patient's perspective. It is my intention to share information about many aspects of lupus : research, drugs, tests, symptoms, support groups, diagnosis delays, sleep problems, disability claims, and and many other topics.

In my next blog, I will talk about a getting a lupus diagnosis. There is a lot I can say about it after seeing twenty doctors (and many of them specialists) and wasting several years. I will write me next blog when I return next week.