NUTRITION GUIDE

Body mass index, or BMI, is a calculation of weight relative to height. It is important to know your BMI because it can be used as an indicator of overall health. It does not account for body composition of muscle and fat, but it is a useful tool, nonetheless. The formula is: [wt in kg/ht in meters2]. To calculate your BMI follow these steps:

1. Determine your weight in kilograms by dividing your weight in pounds by 2.2.
(Example: Weight in pounds = 130, weight in kilograms = 59.1)

2. Determine your height in meters by multiplying your height in inches by 0.0254.
(Example: Height in inches = 65, height in meters = 1.65)

3. Determine your height in meters2 by multiplying your height in meters by your height in meters.
(Example: height in meters = 1.65, height in meters2 = 2.7225)

4. Divide your weight in kilograms by your height in meters2 to determine your BMI.
(Example: Weight in kilograms = 59.1, height in meters squared = 2.7225, BMI = 21.7)

Once you have calculated your BMI, determine what category you are in:
• Underweight: BMI < 18.5 • Normal weight: BMI 18.5-24.9 • Overweight: BMI 25.0-29.9 • Obese: BMI >30

If your BMI is below 18.5, focus on gaining weight. A good goal BMI while actively fighting NTM is at least 20.

One common side effect of NTM is unintentional weight loss. Sometimes this happens before a diagnosis, sometimes after. Weight loss can happen because of many factors including your body’s response to the mycobacterial disease, increased calorie (energy) needs, decreased appetite, early satiety (feeling full quickly), nausea, taste changes, side effects of medications, and fatigue.
The best way for you to gain weight is to eat more. However, frequently NTM patients experience a decreased appetite that coincides with weight loss, making it difficult to eat more. If possible, the first step in treating your decreased appetite is to treat the underlying cause. Treating conditions such as mouth sores, dry mouth, pain, or depression should help improve your appetite. Additional treatment for decreased appetite and associated weight loss may include appetite-stimulating medications, medications that help food move through the intestine, and nutritional supplement drinks.
Although you may not feel like eating, it is important to remember that proper nutrition and maintaining a healthy weight are important parts of overall care. Eating well can also help you better cope physically and emotionally with the effects of treatment.

• Treat food like a medication and eat on a schedule. Do not miss a “dose.”

• Eat five to six small meals a day and snack whenever you are hungry.

• Determine what times of day you are most hungry, make sure to eat at those times, and do not limit how much you eat.

• Have snacks ready to eat, include 2-3 designated snack times each day between mealtimes.

• Eat nutritious snacks that are high in calories and protein.

• Keep your favorite foods on hand for snacking and meals at any time of day.

• Focus on easy-to-prepare and take-out foods.

• Add calories and protein to foods by adding cheese, peanut butter, and nuts.

• Fat is a concentrated source of calories. Small amounts of vegetable oil, butter or margarine can increase the calorie content of any food.

• Use higher calorie versions of foods you eat (butter crackers or cheese crackers instead of soda crackers).

• Avoid “lite” products (skim milk, low fat yogurt and cottage cheese, reduced calorie mayonnaise, low-fat salad dressings, etc).

• Don’t fill up on fluids. Limit fluids to 6 ounces per hour during the throughout the day and avoid eating or drinking three hours before bedtime.

• Avoid filling up on low calorie foods like salad at mealtimes.

• Choose nutritious drinks, such as whole milk, milkshakes, and juices. Consider supplemental drinks such as Boost® or Ensure®.

• Ask family members or friends to prepare foods when you are too tired to cook. Ask them to shop for groceries or buy pre-cooked meals.

• Try to eat in pleasant surroundings and eat meals with family or friends.

• Ask your doctor about ways to relieve gastrointestinal symptoms such as nausea, vomiting, and constipation.

• If your sense of taste is diminished, try adding mild spices and condiments to foods to make them more appealing.

• Some NTM patients experience anemia (low iron count in the blood), which can increase the feeling of fatigue. Talk to your doctor about this possibility, and if you are anemic, increase foods that are rich in iron, such as spinach, or talk to your doctor about adding an iron supplement to your daily routine.

• Try light exercise, such as a 20-minute walk, about an hour before meals to stimulate your appetite. (Consult your doctor before starting an exercise program.)

• Meet with a registered dietitian (RD) for additional advice on meal planning.

• Consider recording everything you eat and drink for a three-day period to assess opportunities for improving your caloric intake. This journal can also be reviewed with your physician or dietitian.

• Applesauce
• Bread products
• Popcorn
• Cakes
• Cereal
• Cereal bars
• Milk (regular or chocolate)
• Cookies
• Cottage cheese
• Cream cheese
• Dried fruit
• Eggs
• Energy bars
• Frozen yogurt or ice cream
• Fruit
• Gelatin
• Granola
• Instant breakfast shakes
• Juice
• Milkshakes
• Nuts
• Supplements (Boost, Ensure)
• Peanut butter
• Pizza
• Pudding
• Sandwiches
• Yogurt

Another way to promote weight gain is to boost the calories in foods you already eat – some suggestions are listed below. An increase in 500 calories a day should result in weight gain of about one pound per week.

Granola: 1/4 cup = 130 calories
• Sprinkle on yogurt, ice cream, pudding, custard, and fruit.
• Mix with dried fruits and nuts for a snack.
• Layer with fruits and bake.
• Use in cookie, muffin, and bread batters.

Butter, margarine, and oils: 1 Tablespoon = 100 to 125 calories
• Add to soups, mashed and baked potatoes, hot cereals, rice, pastas, and vegetables.
• Dip bread in olive oil.
• Combine with herbs and seasonings to spread on cooked meats, burgers, fish, and egg dishes.

Cheeses: 1 oz = 75 to 130 calories
• Add to salads, vegetables, and include in main dishes.
• Slice cheese for snacks or use single serving cheeses.
• Try new cheeses for variety.

Mayonnaise: 1 Tablespoon = 100 calories
• Spread on sandwiches – on both pieces of sandwich bread.
• Mix into salads.

Peanut butter: 1 Tablespoon = 90 calories
• Spread on crackers, celery, and fruits such as apples, bananas or pears.
• Use on toast or English muffin.

Cream cheese: 1 Tablespoon = 50 calories
• Spread on breads, muffins, fruit slices, bagels, and crackers.
• Add to vegetables.

Honey, jam, jelly, syrup, and sugar: 1 Tablespoon = 45 to 60 calories
• Add to bread, cereal, milk drinks, and fruit and yogurt desserts.
• Top buttered toast with cinnamon sugar or jam.
• Use as a glaze for meat and chicken.
• Mix with peanut butter for fruit dip or cracker spread.

Sour Cream: 1 Tablespoon = 25 calories
• Add to cream soups, baked potatoes, macaroni and cheese, vegetables, sauces, salad dressings, stews, baked meat, and fish.
• Use as a dip for fresh fruits and vegetables.
• Use as a topping for cakes, fruit, gelatin desserts, breads, and muffins.

Dried Fruits: Calories vary
• Cook and serve for breakfast, dessert, or a snack.
• Add to muffins, cookies, pies, breads, cakes, rice and grain dishes, cereals.
• Combine with cooked vegetables such as carrots, sweet potatoes, yams, and acorn squash, and add to cold salads.
• Combine with nuts and granola for a snack.

It is important to eat enough protein, especially lean protein. Every cell in your body needs protein. It is a major component of muscles, enzymes, hormones and antibodies that fight infection. Remember that your need for protein is increased because your body is working harder than normal to help fight your NTM infection.

It is difficult to determine how many grams of protein you should eat daily.
A good way to estimate your daily required protein intake is to take your weight in pounds and divide it by two. (Example: weight = 130 pounds, estimated daily protein needs = 65 grams.) If you have lost weight, you should multiply that number by 1.2. (Example: weight = 130 pounds, estimated daily protein needs = 78 grams.)
Protein needs may increase with a variety of things including age, illness, weight loss, and pre- and post-surgery.
If you have kidney problems, be sure to discuss any dietary changes with your physician.
Some good food suggestions for patients like you include:
Lean Proteins: beans, chicken, eggs, fish, meat, nuts, seafood, soy, turkey, dairy, cheese, yogurt
Grains: barley, oatmeal, quinoa, rice, whole wheat
Non-citrus fruits: apple, banana, berries, melon, peaches, grapes
Vegetables: bell peppers, broccoli, carrot, cucumber, onion, squash
Starches: Corn, potatoes
Herbs and Spices: basil, cilantro, oregano, rosemary, thyme

Patients with NTM disease need more fluids. Fluid is essential for thinning mucus secretions, which, in turn, helps the body remove mucus from the airways. Our bodies also need fluid to help regulate body temperature, carry nutrients to cells, metabolize medication, remove waste from the body, keep stools soft, and moisturize the skin and tissues. Despite its importance, water is often called “the forgotten nutrient.”

We lose two and a half to three quarts (10 to 12 cups) of water daily through normal body functions. More water is lost in hot weather, with fever, or with increased physical activity. As we age, we lose more water due to a normal slow decline in kidney function. Fluid losses need to be replaced daily.
Thirst is not always a good indicator of fluid needs. It is common that a person does not feel thirsty until after they have already become dehydrated. You may not feel thirsty after strenuous exercise even though water lost through perspiration and the lungs needs to be replaced. People over 65 tend to experience a decreased sense of thirst.

We often hear that we should drink eight 8-ounce glasses of water daily. This is a good guideline, but as someone who is taking many different medications and doing airway clearance throughout the day, requiring thinned secretions, you may need more hydration than that. Talk to your doctor or a registered dietician about your specific needs.
Certain liquids can be counted toward your fluid requirement and others cannot. Alcoholic beverages are dehydrating, so they are not counted toward the daily goal. Caffeine (coffee, tea, and caffeinated soft drinks) may also act as a diuretic and worsen dehydration.

Fluids that can be counted toward your daily fluid goals include the following:
• Water
• Milk
• Juice
• Fruit drinks and punches
• Soda
• Nutritional supplements (Boost®, Ensure®, Scandishake®)

The calorie content of various fluids is an important consideration. A few daily servings of artificially sweetened beverages may safely be included in your diet. If you need to gain weight, choose higher calorie fluids such as 2% or whole milk, juices, milkshakes or nutritional supplements instead of water or low-calorie beverages.

Drinking oral supplements can be a good way to increase your daily caloric intake. Most supplements can be found at the grocery store or pharmacy. Many can also be ordered online. You should not use supplements as meal replacements, but they can be an important part of your weight gain and hydration.
Supplement Calories Protein (g)
Ensure® (8 oz) 250 9
Ensure Plus® (8 oz) 350 13
Boost® (8 oz) 240 10
Boost Plus® (8 oz) 360 14
Scandishake® (1 packet) 440 5
Scandishake® (with 8 oz whole milk) 600 13
Resource Breeze (8 oz) 250 9
Vitamin and Mineral Supplements
Taking a multi-vitamin/mineral supplement when fighting NTM is generally a good idea. It is difficult to consume all of the recommended vitamins and minerals in a day, especially if you are focusing on gaining weight. Some suggestions for taking vitamin and mineral supplements:

• Check with your doctor, pharmacist, or dietitian before staring a supplement regimen as supplements can interfere with some medications. This is particularly important for NTM patients who generally take several prescription medications at the same time.

• A multi-vitamin/mineral supplement should be taken with food. If taken on an empty stomach, poor absorption can occur along with possible upset stomach.

• Do not take multi-vitamin/mineral supplements at the same time as antibiotics. Minerals have a binding effect and can prevent medications from being absorbed. You should take supplements at least two hours before or after taking antibiotics.
Calcium and Vitamin D
Calcium and vitamin D are required for the normal growth, development, and maintenance of our bones throughout our lifetime. It is difficult to obtain the recommended daily intake of calcium from diet alone. Consider taking a calcium/vitamin D supplement along with a daily multi-vitamin/mineral supplement. Here are some guidelines for taking calcium supplements:

• Calcium is best absorbed if taken in separate doses, not exceeding 500-600 mg at one time.
• Calcium carbonate and calcium citrate are preferred sources.

• Calcium carbonate should be taken with food. Calcium citrate can be taken with or without food.

• Calcium citrate may be more absorbable for the elderly and those taking antacids due to decreased stomach acid production.

• Calcium citrate may result in less bloating, constipation, and stomach upset for some individuals.

• Do not exceed 2500 mg Calcium or 2000 IUs Vitamin D in supplement form daily.

• Remember, take these supplements at least two hours before or after taking antibiotics.

• Excess calcium intake can contribute to significant medical problems, including kidney stones or kidney failure in select patients. Discuss increased intake of calcium with your physician.

Probiotics are live bacteria and yeast that improve your gut health. Taking probiotics while you are on antibiotics for NTM may help prevent antibiotic-associated diarrhea and decrease gastrointestinal complaints such as abdominal pain, bloating, cramping, and nausea. Probiotics are found in cultured foods (eg, kefir, yogurt) and in supplemental forms (eg, tablets, powders) at most grocery stores and pharmacies. Take a therapeutic dose daily, estimated at one billion to one trillion (109- 1012) colony-forming units (CFUs) per day, and make sure to take them at least two hours apart from your oral antibiotics. Be sure to follow the storage instructions on the packaging.

Food-Drug Interactions
Some prescription medications come with instructions to avoid certain foods when taking the medication or to avoid eating within a certain amount of time. Pay careful attention to directions given with medications to promote maximum absorption and efficacy.

Herbal Supplements
If you are considering taking an herbal supplement while on antibiotic treatment for NTM, check with a doctor, pharmacist, or dietitian to be sure there are no potential negative interactions between the supplement and the medication.

Food-Drug Interactions

Some prescription medications come with instructions to avoid certain foods when taking the medication or to avoid eating within a certain amount of time. Pay careful attention to directions given with medications to promote maximum absorption and efficacy.

Alcohol

For many people a glass of wine with dinner or a cocktail when out with friends is a part of life. For the most part consuming a moderate amount of alcohol when on treatment for NTM is okay. Check with your doctor to make sure your liver is functioning properly and limit alcohol consumption to no more than one drink per day as alcohol has a dehydrating effect and can interfere with your medications.

Charting medications every day may seem like an annoying task, but it is very important for you as an NTM patient, as you take multiple medications and possibly other supplements. You may forget to take a medication or reorder it, which presents a problem with treatment as many of the medications must be taken on a regular schedule.

Many people like to use a medication chart to keep track of their medications and when to reorder them, and this may be something you wish to consider. A printable medical chart can be customized for you, and it should be placed in an area that you see often. The front of the refrigerator door may be a good idea because people often go there first thing in the morning.

Another benefit of making a medicine chart is that you will be writing down all medications. This list can then be copied and given to a physician or pharmacist, which will help them monitor for potentially harmful drug interactions or for supplements that might interfere with the medications being used to treat your NTM infection.
Your doctor might be away sometimes when you need to reach him or her, and you may end up speaking with a doctor who is unfamiliar with your medical history. It is important for you to keep careful records of what medications you take, in what doses, how often, and how they are mixed if compounded. Remember to follow up with your doctor as soon as he or she returns to the office.
The U.S. Food & Drug Administration has a downloadable and printable Medication Schedule which includes a page for notes about doctors’ and pharmacists’ contact information. Click here to download it.

There are other printable medication logs available. Click here for a Daily Medication Schedule, or click here to download a Medication Record.
It’s also important to keep track of when your prescriptions may need to be refilled. Click here for a Medication Refill Log.
If you prefer to use an electronic tracking method, there are apps available for download to help you track your medication usage. One such app is My Med Schedule. Visit www.mymedschedule.com for more information.

Travel, particularly by airplane, can be burdensome for NTM patients who deal with medications through IV or inhalation, or who require supplemental oxygen. Thankfully, there are ways to make this much easier for you, your traveling companions, and any security personnel you will deal with along the way.

The Transportation Safety Association (TSA) has approved a wallet-sized printable card that you as a traveler can use to notify agents of any conditions or devices that would require special attention. This card fits in a wallet and says, “I have the following health condition, disability or medical device that may affect my screening” with a blank space to be filled in by the passenger. The cards do not exempt a passenger from screening.

Click here to download and print your TSA Notification Card.
You should also get a physician’s note/letter, explaining your medical issues and the medications and devices needed for them.

According to the TSA, medications (including liquids and gels) are not subject to the 3-1-1 rule and are allowed through security. However, if they exceed the 3-ounce limit, the TSA requires that the medications be declared and screened in its own bin going through the X-ray machine. If you are traveling with medications, you must declare them to the TSA screening agent.

The TSA requires that medications be in the original containers, with the original labeling. For prescription medications, this means the pharmacy bottle and labeling. Over-the-counter medications must be in the bottle with the manufacturer’s label. Do not travel with medications in any other container, as TSA agents must be able to easily identify the items inside.

When going through security, the rules for carrying liquid medications and syringes are simple: labels and packaging. If you are carrying any kind of medical equipment, the screening agent must be notified. If you are carrying a liquid medication on the plane, the vials or preloaded syringes must be labeled clearly with the original pharmacy label. If you carry vials and need syringes, you may carry as many unused syringes as needed, but if you are carrying empty syringes you MUST have with you the liquid medication that they will be used for.

Other medical devices including oxygen concentrators and nebulizers are also allowed through security and on airplanes but are subject to standard screening procedures as well. Again, a notification card and/or physician’s note may help.

There is a long list of medically relevant devices and aids that are allowed through security, including mobility aids (wheelchairs, walkers, crutches) and gels or frozen liquids used to cool medications.
If you have a PICC line, you may wish to request a private screening.
This is also where a notification card might come in handy, as you can discreetly notify the TSA agent that you have a medical device that cannot be removed.

It’s also helpful to note that airlines’ carry-on limits do not apply to medical supplies or equipment.
If you are still concerned that you might have trouble getting through security or need assistance, call both the airport and airline ahead of your departure to alert them that you will need special attention. If you experience any problems at the security check point, you can ask for a screening supervisor.

For more information on travel guidelines, and for contact information for the TSA if you have further concerns, click here to visit the TSA’s website.

This is not meant as an endorsement, but the following products have been reported as helpful by members of our support groups. Consult your physician.

Some patients have reported that certain exercise techniques such as Qi Jong help with airway clearance due to their focus on breathing technique and movement. This or another form of gentle exercise may be of benefit to you, so you may want to look into available classes, or lessons available through dedicated television channels or online.
Biotene toothpaste/mouthwash/gum/moisturizing gel for dry mouth. These can be found at Wal-Mart, Costco, most drug stores, and other retailers. Biotene is made by GlaxoSmithKline.
Probiotics (including acidophilus) help you tolerate the antibiotic regimen and prevent yeast overgrowth as well as gastrointestinal upset. Click here for more about using probiotics.
Ginger or ginger snaps may also help with gastrointestinal soothing.
Nutritional supplements such as Ensure® or Boost® for added nutrition.
Nasal wash products: NeilMed Sinus Rinse® products: www.neilmed.com.
Patients are often advised to limit contact with water vapor and dusts that often harbor mycobacteria. Click here for more information on reducing exposure.

There is a rubber sleeve that fits over a PICC line during showers and keeps the area completely dry. It works by allowing the patient to pump air out of the sleeve, keeping it airtight. Prices generally range from $35 to $40, depending on size.

NTM lung disease is a serious illness that has an impact on your life, and it can have a serious impact on your family’s life as well. You may feel like your relatives and friends don’t understand what you are going through. It is difficult for someone who has never faced such an illness to grasp what it’s like to have to live with it, particularly when it’s a disease they probably have not heard of before.

You might find that giving them a copy of our pamphlet or referring them to this website helps them better understand what you are dealing with. You should not be afraid to speak up about what your needs are. If you need help with something, or if you just need someone to give you a regular call or visit, let them know. Communicating your needs clearly might be just what they need to help you.

There is a large burden, however, placed on a primary caregiver who helps you more with your daily routines and medications. For both of you, a serious illness can be upsetting and even cause depression to set in. Don’t ignore this issue – seek help for it, for both of you. It will help you both and will better enable you to deal with all the challenges you face. Whether through a mental health professional, an online support forum or a local support groups, make sure you and your loved ones get the emotional help you need.

As the patient, the condition of your lungs will also play a big part in how you are able to deal with day-to-day matters. Talk with your doctor about exercise, respiratory therapy and pulmonary rehabilitation. These services are designed to help you get stronger, so you can function better with everyday activities and independence.