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Work

Many people are able to continue working during Inflammation Therapy (IT). It's a very individual thing which depends in part on the severity of disease symptoms, control of Herxheimer reactions, the level of photosensitivity and ability to accommodate necessary light restrictions at work.
 
Patients who feel well enough to work should be able to follow IT while continuing to work.

 
 
 
 
Herxheimer reactions are unpredictable
 
The intensity of the immune system reaction is an unknown at the start of therapy. A high 1,25-D suggests the patient will have more severe reactions but this isn't true for everyone.
 
There’s no certain correlation between the level of D-metabolites assessed before therapy and the immune system reactions to be expected. Some patients with low 1,25-D will have strong Herxheimer reactions. All patients should be cautious when starting IT and follow instructions carefully to avoid serious immune system reactions or serious symptoms due to sun/lights exposure. There are detailed instruction in the Physician's Guide to Inflammation Therapy available in our Libary of Information.
 
The initial few weeks tend to be the roughest with an increase in symptoms due to a rapid fall in the 1,25-D level which causes many hormonal adjustments. These symptoms are usually neurological in nature and include increased fatigue, headache, sleep disturbances, mood changes and photosensitivity. They usually subside in 2-3 weeks. Some patients have a reduction in symptoms with Benicar® alone but it may be advantageous to plan for time off from work in case symptoms become intolerable.

The addition of Minocycline will cause Herxheimer reactions. Usually these symptoms are similar to current or past disease symptoms but patients have been surprised by entirely new symptoms. Even though Minocycline starting doses are very low, some people have had severe reactions. It is best to anticipate this. In the first months of IT, patients will be learning to recognize the immune system response and how to maintain tolerable symptoms.
 
The beauty of IT is that patients can adjust the dose and times of antibiotics to avoid strong immune system reactions at the times when they need to work or feel better for some other reason.
 
Light exposure
 
Light exposure is one of the biggest drawbacks of a work schedule. Travel to and from work may cause the most exposure to light. Patients should take as many precautions as they can with natural and artificial light exposure to minimize symptoms which could make it difficult to continue IT. Patients whose work exposes them to natural light exposure (even through windows or skylights) should protect themselves as well as possible. Limiting natural light exposure is often essential and this restriction may be necessary for some months.
 
Employers may make accommodations (e.g., moving your office or covering windows, etc) if necessary, under the Americans with Disabilities Act. It may be possible to do some or all work from home.
 
Patients who are unavoidably exposed to natural light can expect to feel worse and may not be able to continue IT for that reason.
 
Patients who must work outdoors may find it impossible to continue IT. For some patients, it may be necessary to make a job change in order to regain their health.

Fluorescent lighting may cause an increase in symptoms. Sunglasses and a hat with a brim may help if the lighting cannot be changed.
 
Natural light = protect skin and eyes.

Artificial light = protect eyes; not skin.
 
 
Helpful tips to manage working
 
• Plan ahead

• Arrange a low light ‘retreat’ at work if possible and expect to retreat to your low light area at home if symptoms worsen.

• Never leave home without your sunglasses.

• Know what strategies work for you to reduce symptoms.

• Have acceptable food on hand.

• Develop a backup plan in case you are unable to work on a particular day.

• Be prepared to work when you aren’t feeling great because you aren't going to be 100% for a long time. If your work performance is suffering, ask for help.

• Schedule regular rest and food breaks and allow time for increased rest when at home after work and on days off.
 
Caring for children
 
Childcare responsibilities may be difficult to meet if light sensitivity is high and the children require transporting to and from activities or supervision during outdoor activities.
 
Parents of pre-school children can more easily control their exposure to natural light by scheduling indoor activities, or outdoor activities after dark.
 
Recreation
 
It’s possible to have a life while on the IT but extended outside activities that are recreational only should be postponed.
 
Think of them as toxic because they could make the road to recovery very bumpy. Many patients have given up treasured outside activities for the short-term, recognizing that the benefit of good health is well worth the sacrifice.
 
 Ideas for limited lighting recreation
 
• Sleep late and take an afternoon nap so you can stay up later to enjoy after-dark activities
• Take up astronomy or stargazing as a hobby
• Garden or fish during the night or at dawn and dusk
• Use a miner’s headlamp to garden after dark
• Go to a movie
• Take an evening swim
• If shopping is your idea of fun, shop after dark
• Enjoy a movie and a meal at a friend’s house
• Go bowling
• Go to an indoor shooting range
• Take the kids to a games arcade
• Take a trip to the biggest shopping mall nearby (stay away from windows)
• Spend an overnight at a nice motel with a pool
• Take the family to an indoor water park
• Enjoy a leisurely meal at your favorite fancy (low lux) restaurant
• Splurge on an evening at the theater
• Visit a museum, aquarium or planetarium
• Spend a couple of hours in the windowless area of your local library
• Get lost in a good book
• Write a book or poetry
• Have a cooking ‘class’ with the kids
• Start a sewing project
• Work on a craft (e.g., knitting, crocheting, needlepoint, scrap booking, painting, woodworking, mosaics, etc.)
• Get a metal detector and look for treasures after dark
• Exchange play dates with your children’s friends so you have some adult alone time
• Ask friends to take the kids on daytime outings
• Resurrect those board games
• Go to an evening ballgame
• Go indoor ice skating or roller skating
• Swim in a burkini or wet suit
• Pitch a tent in the backyard and go to ‘camp’ with the kids
• Build a fire in an outdoor fireplace after dark, roast marshmallows and sing songs and tell stories
• Play catch with a lighted ball after dark
• Rent a beach house so you can stay indoors during the day while your spouse plays with the kids, then enjoy the beach together after dark
• Have an indoor picnic
• Take a nature walk at night
• Bird watch at dawn
• Learn to play a musical instrument
• Subscribe to online DVD movies
• Go to an evening church service
• Research the family genealogy
• Take an online course
• Learn a foreign language
• Create an aquarium
 
When energy is very limited
 
• Listen to books on tape or radio
• Ask supportive friends to visit for short periods
• Keep a journal of progress
• Maintain contacts by phone or online with a laptop