BE AWARE OF MEDICATIONS CONTAINING ACETAMINOPHEN

PRODUCTS CONTAINING ACETAMINOPHEN

                                                               
 

Which one of us does not pop a pain killer when we have headaches, arthritis pain or sore muscles? How about when we have coughs, colds, the flu, allergies, fever, or tooth aches? It is very prevalent for people with lupus, along with all of those healthy people, to take over-the-counter medication. But did you know that you are at risk of serious health problems from taking medicines containing acetaminophen (ACET).

Taking too much acetaminophen can cause liver damage - sometimes serious enough to require liver transplants or cause death. ACET is the leading cause of liver failure in the US.  It sends 56,000 people to emergency rooms each year. Half of those people unintentionally overdosed.

 And just how easy is it to exceed the daily limit of 4000 mgs? Extra strength Tylenol contains 500 mgs of acetaminophen and regular Tylenol contains 325 mgs. Some medicines including ACET contain 650 mgs or even 1000 mgs. In the case of Extra Strength Tylenol , If you follow the dosage instructions of up to 2 tablets every four hours you would consume 6000 mgs (150% of the daily limit) thus overdose.

The Federal Drug Administration working group reviewed the FDA adverse event data base and a large liver failure study and found the liver damage occurs in the range of 5000 – 7500 mgs in 24 hours. The working group recommended that the daily limit be reduced to 10 regular pills (3250 mgs) a day. This  recommendation has not been implemented.

Acetaminophen is known by many other names (APAP, N-acetyl-para-aminophenol, and paracetamol.) It  is widely available in more than 200 medications.  It  is also contained in prescription pain medications such as Vicodin, Percocet , and Oxycodone that are widely used.  In one year, 200 million prescriptions containing acetaminophen were dispensed in the U.S.

 The fact that so many medicines contain acetaminophen increases the danger of an overdose.  “The risk of liver injury primarily occurs when patients take multiple products containing acetaminophen at one time and exceed the current maximum dose of 4000 mgs within a 24 hour period “said Dr. Sandra Kweder, the FDA’s deputy director for new drugs.

Tylenol is just one of 44 brand names of acetaminophen. Additionally, it is found in medicine combined with other drugs.  Some names you may recognize are some forms of Robaxcet  Anacin, Alka-Selzer ,Dimetapp, Sudafed, Dayquil,  Dristan, Robitussin, Excedrine. Midol PMS, Vicks 44 ….. For a complete list see the MedPlus website cited at the end of this blog.

Another consideration is consuming ACET while using alcohol or drugs. It increases the risk of liver damage especially amongst older people who have a lower ability to clear drugs from their systems. For those who consume alcohol regularly, the daily limit of ACET is 2000 mgs a day.  This works out to 4 Extra Strength Tylenol a day.  Some doctors recommend that you should not use alcohol when using any over-the-counter or prescription medicines.

According to the FDA if you drink 3 or more alcoholic beverages a day you should consult with your doctor about a safe dose of ACET. I may be naïve but I think that heavy drinkers are unlikely to bring this up with their doctors. But just think of all the heavy drinkers that take Tylenol for hangovers! The damage caused by ACET is more likely to occur when it is taken after alcohol is metabolized.

Even one overdose of acetaminophen can cause permanent liver damage. Call poison control as soon as possible, in case of an overdose. There is an antidote named N Acetycystein which is most effective if  taken within 8 hours of ingesting the ACT.  Don’t hesitate even if you feel well. The symptoms of an overdose may not appear for up to 24 hours. They include abdominal pain, nausea, vomiting, not feeling well, unable to eat, and a poor appetite.

WHAT ABOUT SAFEGUARDS?

Reducing the amount of ACET in medications

Due to evidence linking it to liver failure, the American Food and Drug Administration has capped the amount of acetaminophen to 325 milligrams per capsule in prescription painkillers. However, they have not followed the recommendations of the FDA working group to also lower the dose of acetaminophen in the over-the-counter products. 

Labeling

4000 mgs is the stated limit on Tylenol bottles but that leaves little margin for safety. There is no mention of permanent liver damage caused by exceeding the limit. This dosage instructions would be more explanatory if it read “1-2 tablets every four to six hours but not to exceed  8 tablets a day or permanent liver damage may occur in a healthy adult.

 In Canada there is no requirement to place warnings on bottles of extra strength ACET. However,  in 2009, Health Canada issued  a voluntary warning for ACET bottles. It reads” taking more than the maximum daily does may cause severe or possibly fatal liver damage.”

Monitoring and Education

Have you been questioned about what over-the-counter medications you take? I haven’t. The prescription information sheets issued with your prescription says that you should inform your doctor or pharmacist of all of the prescriptions and over-the-counter medicines you take. Without this information just how are pharmacists able to monitor drug interactions?

 Given the potential for unintended abuse, it would be appropriate for doctors to question and warn their patients about the risks of using too much acetaminophen and for pharmacists to warn patients particularly those with chronic pain conditions.  What could be even more effective would be to have all purchases containing ACET rung through the pharmacy till so people can be warned about the dangers of overdosing when using multiple medicines.

SO REMEMBER, the next time you are buying over-the- counter medication, be sure to check the label closely and ask the pharmacist about interactions with your prescriptions.

                               

SOURCES:

http://www.emedicinehealth.com/acetaminophen_tylenol_poisoning/article_em.htm

 http://www.nim.gov/medlineplus/druginfo/med/a681004.htm

 http://www.rxlist.com/tylenol-drug.htm

www.agingincanada.ca/dangers_ of_ acetaminophen.htm

http://www.hc-sc.gc.ca/dhp-mps/prodpharma/applic-demande/guide-ld/label_stand_guided_ld-eng.php#a6-1

Is Sugar Toxic?

IS SUGAR TOXIC?

Yes, according to the new research reported on 60 Minutes,  April 1st, 2012. I'd like to think it was an April Fool's Day prank but no such luck. This is a big problem for my sweet tooth! It is now explainable though, since sugar is as addictive as cocaine. Now that I know the truth about sugar, I am going to cut back on it and avoid consuming 130 pounds annually - like the average American.

Where did all of this sugar come from? Well, in an effort to reduce heart disease the food industry removed fats from food and replaced it with sugar (to maintain the flavor). What has transpired? Heart disease has skyrocketed along with cancer, Type 2 diabetes and obesity.

But why is sugar toxic? Sugar increases LDL (as in the blood vessel blocking type); it causes insulin to spike; and it feeds the growth of some cancers.

It would be nice if it was possible to replace sugar with say, honey. However, according to the "experts" all sources are equally bad.  For more info go to: www.cbsnews.com/8301-18560_162-57407294/is-sugar-toxic/

IS THE SALT IN YOUR DIET KILLING YOU?



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We have all probably heard that eating salt causes high blood pressure! But is it a big deal? A recent MSN news story stated that 800,000 Americans die each year due to diseases related to high blood pressure ((kidney disease, heart disease, and strokes).

The US Centres for Disease Control and Prevention found that 9 out of 10 Americans exceed the Tolerable Upper Intake Level (UL) of 2300 mg. This is the standard adopted in North American as the highest intake level that is likely to pose no risk of adverse health effects. It is equal to 1 teaspoon of salt a day.

Canadians are no different from their southern neighbours. The average Canadian eats more than 3400 milligrams of salt daily. Even without adding salt to food, it is there in our diet.

Only 1500 mg of salt is needed daily to support health. Sodium is needed in the body to regulate fluids and blood pressure, and to keep muscles and nerves running smoothly. People with high blood pressure, kidney disease, diabetes and over the age of 50 years should be adhering to an upper limit of 1500 mg.

 So we think we are okay because we don't add salt to our food and rarely snack on chips... But did you know the biggest source of salt is bread and buns. Not because it contains the most salt but we eat several servings each day that add up. According to a US study Americans get 44% of their salt from the following foods which are listed from the highest salt source to lowest: bread and buns, cold cuts and cured meat, pizza, poultry, soups, hamburgers, sandwiches, cheese, pasta dishes, meat loaf, chips and pretzels. The processed foods and restaurant meals contain even more salt than usual.

I am a little embarrassed to admit the food in the picture above came from my kitchen.

• The bagel contains 390 mg (or 26% of the daily value) based on limit of 1,500 mg a day.
• The can of mushroom soup contains 2250 mgs of salt which is well over the tolerable upper limit for my age group. When you look at the label on the can it states the sodium % based on the serving size and daily limit of 2300 mg. But this label in my opinion is misleading. The serving size is a ½ cup of soup. I don’t know about you - but I eat most, if not, a whole 10 oz. can of soup.
• Even the Healthy Choice – Chicken with Rice Soup contains 960 mg in the can of ~ 2 cups and according to the label it contain 40% less sodium that leading competitors. It is interesting to note that American Heart Association put its sign of approval on this can of soup. In the small print it states the food meets their criteria for saturated fat and cholesterol healthy people for children over the age of 2.

That reminds me of a Fifth Estate program I saw about sodium. The chief nutritionist of the Canadian Heart and Stroke Foundation was questioned why she would be recommending canned soups with high sodium levels. I can’t find the documentary in the CBC archives so it must have been a number of years ago. However, I clearly recall hearing that packaged foods in Canada have a higher content of salt than American foods. I was flabbergasted to hear the food manufacturers had somehow decided that Canadians had bigger appetites for salt and demand it! You have to wonder if this is still the case.

Governments are now looking at ways to influence the sodium content of Canadian and American diets. In the U.S. they predict they can save billions of dollars in health care costs if they can reduce the average sodium intake by 20%. In Canada, they have set a goal to reduce the average Canadian consumption of sodium to 2300 mg by 2016.

• You may hear some people saying that the government has no role in their food choices. Remind those people that they can always get out the salt shakers and add extra salt to their food, if health is not a consideration.

 In the meantime, we can choose to avoid certain manufacturers that add too much sodium to their products. From what I have seen with Campbell’s soup, this may be one place to start. And remember to read the labels to find food that is truly sodium- reduced, not just advertised as such.  

Government Regulations of BPA

GOVERNMENT REGULATION OF BPA

CANADA:

• In 2006, the  Chemicals Management Plan was introduced to review the safety of widely-used chemicals that have been in the marketplace for many years, and to update our knowledge and understanding of these chemicals.

•  In 2008 Canada banned baby bottles containing BPA. They also proposed declaring BPA toxic because of reproductive and developmental toxicity and environmental effects.

• On October 13, 2010, BPA was declared a toxic chemical by the Canadian government and added it to Schedule 1 of the Canadian Environmental Protection Act.  Canada was the first country to make this declaration.

•  The American Chemistry Council, a Washington- based industry group criticized Canada’s decision. This lobby group speaks on behalf of a $10B a year industry.

•  On December 2, 2010 (less than 2 months later) Health Canada backed down and published this statement “exposure to BPA though food packing is not expected to pose a health risk to the general population, including newborns and infants”

UNITED STATES:

• The FDA approved the use of BPA in the 1960s. And in 1976, BPA was included in a list of more than 60,000 chemicals deemed safe by the US Toxic Substances Control Act

•  In 2008, a National Toxicology Program at the Department of Health and Human Services said it had "some concern" about the possible health effects of BPA on the brain, behaviour and prostate gland of fetuses, infants and children. Nonetheless, months later, the FDA said the chemical was completely safe.  Subsequently, the FDA review board rejected this conclusion.

•  In January 2010, the FDA released a new statement, saying that BPA is of "some concern" for infants and children. Around this time, the Obama administration announced $30M in funding to “answer key questions about the chemical that will help determine what action, if any, is necessary to protect public health.”

•  The FDA was sued in July 2010 by the Natural Resources Defence Council for failure to respond to their petition with 18 months as required by law. This petition called upon the FDA to ban the use of biphenyl A (BPA) in food packaging, food containers, and other materials likely to come into contact with food.

•  The court decision was released in December 2011 which called upon the FDA to make a final decision about BPA by March 31, 2012.

OTHER COUNTRIES:

• In December 2010, the European Union (EU) passed legislation that requires testing and classifying chemicals before they can be put into products.

•  On May 31, 2011, the EU banned the sale of baby bottles containing BPA.

• China and the European Union have enacted legislation prohibiting and restricting the use of endocrine disruptors (including BPA) in commercial products.

                                             

My next blog on BPA presents an overview of the plethora of research done on BPA. Some scientists have been working on it for more than 20 years and they are calling for public input to move the politicians. Someone has to speak up for our environmental health and we need to counter the lobby group for the chemical industry.

BPA IS TOXIC - HOW DO WE AVOID IT?

BPA (bisphenol A) is a polycarbonate chemical used in consumer and medical products to soften plastics. BPA was declared a toxic chemical by the Canadian government in October 2010.

You will still find it in:

• the coatings of canned foods
•    plastic bottles
•    plastic food storage containers and baggies
•    Beverage containers  
•   baby toys
• aluminum cans ....

I know BPA has been in the news for years and many of us have just assumed that something has been done about it already. Well, it is no longer in baby bottles in Canada and some reputable manufacturers have removed it from some beverage containers.  You will recognize the beverage containers because they have BPA free symbols on them.  If there is no symbol on the bottle, assume that it contains BPA. 

BPAs have been found in 90% of Canadians and 93% of Americans (according to studies).



JUST HOW CONCERNED SHOULD WE BE?

Many studies have been done on “our friends” the lab rats over the years and the studies have moved onto the correlation of BPA and disease states in humans in recent years. Here is the long list of harmful effects mentioned in the literature:

 

• Impaired, altered, and compromised immune system and functions
• Cancer (breast, prostate, and uterine)
• Cardiovascular disease
• Diabetes
• Asthma
• Behaviour problems
• Hyperactivity
• Increased aggression
• Elimination of sex differences in behaviour
• Anxiety and depression in female children
• Impaired learning and memory
• Liver abnormalities  
• Reproductive disorders 
• impaired female reproductive development and miscarriage
• Lower sperm counts and sperm defects
• Chromosome abnormalities
• Down’s , Turner and Klinefelter Syndromes

I am worried. Are you ?

When you look at this list you have to wonder whether BPAs are responsible for the increase in lupus and other autoimmune diseases. Does BPA play a role in what seems to be increasing cancer rates in younger age groups?  Could BPA be the main culprit in the increased incidents of aggressive, violent behaviour in females and increasing behaviour problems in children. And how about the decreasing performance of boys in schools?
 

 JUST HOW DO WE PROTECT OURSELVES?

•          Buy foods in glass jars and store foods in glass containers, porcelain or stainless          steel containers. 
•         Never buy plastic water bottles especially in hot climates. Heat increases the release of the toxic chemical. Just think how much heat those plastic bottles have been exposed to when transporting them or while sitting in your car. 
•         Buy BPA free beverage containers. 

I just bought a BRITA BPA free water bottle (officially the Bottle Water Filtration System) to carry filtered water to the tennis courts, the gym and outside activities. Drinking sufficient water is critical to health of the kidneys - a very important consideration for people with lupus.

The Washington Post published an article announcing the EAU good water bottle will be hitting American stores later this month. See blackandblum.com for more info about this charcoal-filtered water bottle.

•         Eat homemade soups or those stored in tetra paks. Yes, the tetra paks are not good for the environment either but at least you are not being exposed to a toxic chemical.
•          Don’t heat up plastic containers – either in the microwave or the dishwasher (despite what the American Chemistry Council might say).
•          Don’t eat canned foods if you can avoid it. Most cans contain PBA.
•        Do not use plastics including shopping bags which are releasing BPAs into the environment from landfills.
•         If you must occasionally use plastic, recycle it.

WHERE ARE THE GOVERNMENT PROTECTION AGENCIES IN REGULATING THIS TOXIC CHEMICAL?

Well, that is another topic in itself – find out in the next blog.

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