Living with Job’s Syndrome

Since there have only been around 850 individuals diagnosed with Job’s Syndrome (or Hyper IgE Syndrome) in the world and not that much is known, I’ve decided to start a list of practical advice that I have been learning from others with Job’s Syndrome. I wanted to find out what else we could be doing to help our son (like supplements, skin care, diet), in addition to following the medical advice provided to us by his physicians.

This is a compilation of advice and experience from others, as well as from our experience. Obviously, use your discretion and intuition about which advice is sound for you or your child. (Note: We are not following all of the tips below as some of them are things that other families are doing. I’ve included a wide range of ideas, in case an idea that we are not necessarily doing may be helpful to someone else with Job’s syndrome).

• Read about our son’s treatment plan here.
• Read about another holistic mom’s treatment plan for her son with Job’s syndrome here. (Her list is so long that I haven’t included all of her tips below).

General tips

•  If you are on antibiotics, be sure to use a good probiotic. Our naturopathic doctor mentioned that it’s best to separate antibiotics from probiotics by a meal (e.g., take antibiotics at breakfast, probiotics at lunch and then the second dose of antibiotics [if required] at dinner).
• One individual recommends using a neti pot to clear out the sinuses. My husband uses a neti pot, and I have used on in the past. This is something that we will probably recommend for my son once he is older.
• One person washes everything in their house with diluted bleach.
• Heilkunst (homeopathic) treatment is helping our son.
• Many of my tips for raising a sensitive child will be relevant for an individual with Job’s Syndrome.
• A scientific study conducted on 8 individuals with Job’s syndrome at the NIH found that acupuncture decreased the severity of Job’s syndrome patient’s symptoms. Acupuncture is a clinically useful and safe therapy for symptom management in patients. We are currently stimulating acupressure points for our son.
• Tips from a 46  year old who now has a “mild form of Job’s syndrome” (but previously had more severe symptoms): works from home to limit his exposure to the world;  limits time in large crowds; drinks green tea daily; taking iron and antibiotic; eats a primarily vegetarian diet with minimal amounts of meat; changes pillow case several times a week and uses clean towels to avoid inflaming the sores on his face; washes his hands frequently, especially when coming home from somewhere; when he feels as though there is a pneumonia/bronchitis coming on, he has Rx that he can fill that will knock it out before it gets worse.”
• One person with very thick mucus that is hard to cough up says:  “I have been using the vest for a number of years but am going to try an IPV at home http://www.percussionaire.com/ which might work better for me. The airway clearance method that works the best for me is http://hospitals.unm.edu/cf/autogenic_drainage.shtml but it is very intense and I do not do it as often as perhaps I should.”

The following tips are recommended by the Swedish Information Centre for Rare Diseases:

• All kinds of physical exercise is recommended to encourage deep breathing. A good level of physical fitness helps the child fight infection and overcome other physical challenges.
• Hand hygiene is important and alcohol-based hand disinfectants are a good complement to ordinary hand-washing.
• Avoid dusty or smoky places, as well as large crowds at times when infections are prevalent.
• Avoid individuals with infections.
• If a humidifier is essential, it must be regularly disinfected with bleach to avoid spreading bacteria and fungi.
• The sensitivity of healthy children to infection falls dramatically after the ages of six and seven and for that reason school does not usually present the same problems for the child as day-care.

Tips for Eczema

Note that although I often refer to the skin rash as being “eczema”, the rash is actually a recurrent staphylococcus (bacterial) infection, which is eczema-like in appearance.

• We have found that bathing daily in tea tree oil and slathering with vaseline helps to control eczema.
• In addition to Vaseline, we use Glassalbase or Eucerin as a moisturizer. Others uses Diprobase, Shea Butter, Zincofax (a zinc-based diaper cream), Aquaphor or Aloe Vera as moisturizers.
• A couple of individuals have mentioned that tea tree oil soap and shampoo helps the skin and scalp. (Tea tree oil has antiseptic, antibiotic, antifungal and antiviral properties). We started putting a couple of drops of tea tree oil in our son’s bath (rather than using the bleach).
• One individual uses a combination of calendula cream and tea tree oil to moisturize her skin.
• One individual makes calendula oil in big batches. “We order fresh organic calendula flowers online, mix with organic olive oil, put in glass jars and stir daily for six weeks. Have a dry paper towel or other breathable top during the process. After 6 weeks, pour through strainer and it’s a soft comfy oil that my 12 year old will actually put on himself after years of fighting all else. You can add lavender essential oil, tea tree or other organic essential oils to the calendula.  The calendula is anti inflammatory and helps fight infections. We still use steroid cream for spots that look like they r getting infected, before applying the oil all over. It soaks in nicely. You can order fresh calendula flowers (4 oz makes a ton of oil) from Mountain Rose Herbs online.”
• One individuals uses homeopathic remedies (Stapholcocus and croton tiglium) to help prevent staph infections (takes them 3 times a day).
• One individual uses lavender oil, which also has antiseptic and antifungal properties.
• Some have recommended bathing with 1/3 to 1/2 cup of bleach, which keeps eczema under control. One individual mentioned that their doctor recommended not using hydrogen peroxide because it kills beneficial bacteria as well.
• Try miracle mineral solution  (MMS) baths. MMS is an extremely effective antiseptic, antibacterial and antifungal, but does not kill beneficial bacteria.
• Try epsom salt baths (we do this, and at least one other individual with Job’s Syndrome does as well).
• Cold compresses or wet wrapping can help extreme cases of eczema.  One person does daily wraps for her son for a couple of hours at a time. When he is really bad, they wrap him for 24 hours for days at a time. They alternate using vinegar with lotion and water with steriod creams. You can soak a pair of pjs in lukewarm water then cover them with sweats.
• One person’s description of wet wrapping: “He bathes 3 times a day for 20 minutes and then I put the creams on him. I then put a wet shirt, long johns and socks on his hands and feet and wrap his face in gauze. I then put a dry set of clothing on top of these wet ones including dry socks over the wet ones. He stays in bed for 2 hrs with warm blankets over him. The last treatment of the day is where he remains in the wet clothing all night.”
• After slathering on the creams, one doctor recommended putting on wet pajamas, and then dry ones over the wet pajamas.
• A couple of people say that their eczema clears up in the sun, and summer is their best time of year. Others say that their eczema is worse during the summer because of the humidity.
• A couple of individuals say that swimming in a chlorinated pool helps their rashes (Note, however, that swimming in chloronated pools has been linked to asthma).
• A couple of individuals recommend using a sun lamp (e.g., Biotron-lamp) twice a day.
• One person tried the light box treatment for months and found it didn’t help.
• Information about natural remedies for dealing with staph infections here.
• One individual recommends wearing natural fibers (i.e.,  no nylon or other synthetic material).
• It’s common for individuals with Job’s syndrome to have cracks at the attachment of their ear. We found that ample use of Vaseline has helped with this.
• Dr. Mercola’s tips for eczema.  More about this here.

1. Saltwater compress
2. Omega 3 fats
3. High quality probiotic
4. Avoid highly allergenic foods (e.g., gluten, dairy, eggs).
5. Getting sufficient sun exposure or taking a quality Vitamin D supplement.

Diet and Supplements

• The E-medicine article about Job’s syndrome states  “calcium supplementation [calcium carbonate] in patients at young ages has been proven to lower the incidence of fractures”. They also recommend supplementation with Vitamin D3 to promote calcium absorption.
• Consider oil of oregano, miracle mineral solution (MMS) or other natural antibiotics in addition to or instead of antibiotics and antifungals.
• One person suggests using colloidal silver, which is a broad-spectrum antimicrobial/antifungal. I’m not sure if they were using it in addition to prescription antibiotics.
• Find out what your food sensitivities are and stay away from them (a couple of individuals mentioned removing dairy from their diet helped). Tips on how to find out what foods you are sensitive to here. There is a scientific paper that describes a case study of an individual with Job’s Syndrome and a milk allergy.
• If you are not allergic to dairy, eat a lot of yogurt with probiotic (good bacteria).
• Eat immune-boosting foods, like garlic, onions, fruits with vitamin C.
• Eat organic and whole foods.
• Eat a diet rich in alkaline-forming foods (avoiding acid-forming foods).
• Take some supplements that boost the immune system. More here.
• Supplement with fish oils or flaxseed oil to boost omega 3 fatty acids. My son takes flaxseed oil and another individual with Job’s Syndrome found it helpful too.
• One person, who has been doing quite well, has been drinking one cup of green tea a day as a preventative measure. Green tea is thought to boost the immune system.
• One person supplements with garlic capsules to help boost the immune system.
• One person takes Manuka honey orally, which is also being used to fight infections in cancer patients. You can apply it to wounds and it supposedly will kill MRSA. It has natural antibacterial, antifungal, antiviral properties. You can read about it on pubmed website. Also there is a manuka honey research department in New Zealand.
• Glyconutrients have helped decrease IgE levels (and associated eczema) for at least a couple of individuals with Job’s syndrome.
• One individual recommends avoiding peanuts, which can promote the growth of Aspergillus, a type of fungus that can be problematic for individuals with Job’s Syndrome.
• One person avoids eating mushrooms because it can make fungal infections worse.
• One individual supplements with lysine, which is one of the essential amino acids.
• One person suggests supplementing with low dose naltrexone, which boosts the immune system by creating endorphins.
• One person tried taking capsules with medicinal mushrooms (Cordycep or reishee) for three months to strengthen the immune system, but didn’t notice a change. Another person takes Host Defense (4 capsules / day), a mushroom supplement.
• One person on the Job’s Syndrome FB group  recommended contacting Dr. Reuven Yagil (reuven.yagil@gmail.com) who is based in Israel, who suggests that camel milk can help reduce IgE levels. One person’s IgE levels decreased from 6,000 to 3,000 after 2 3/4 cups of camel milk. Read about my camel milk post here.
• One person uses Pepsin to help with cyclical vomiting and high histamine levels in the gut.
• Suggested supplements to help individuals with Hyper IgE syndrome on the Herbal Remedies website:
  • Zinc stimulates the immune system and fights infection.
    
  • Coenzyme A supports the immune system.
  • Colloidal Silver acts as a natural antibiotic and disinfectant.
  • Garlic stimulates the immune system and acts as a natural antibiotic.
  • Vitamin A strengthens the cell wall and protects against bacteria.
  • Vitamin B Complex aids healing (we have our son on a Vitamin B complex)
  • Vitamin C with Bioflavonoids aids the immune system function and tissue repair.
  • Vitamin E aids circulation.
  • Burdock Root, Cayenne, Dandelion Root and Red Clover help heal abscesses.
  • Tea Tree Oil kills infectious organisms in external abscesses (we bathe our son in tea tree oil)
• Supplements recommended by Jini Patel Thompson (Listen to your Gut) for a 12 year old individual with HIES (Read more here)
  • an elemental diet
  • Jini’s Wild Oregano Oil Protocol (cycling on and off as needed, according to his symptoms). See her video with 5 year old Zara for the easy way to take it.
  • cod liver oil – 6 capsules per day, or 1.5 tsp.
  • Vitamin D (get levels tested, but likely needs at least 3,000 IU per day)
  • Vitamin E (mixed tocopherols) – 1 per day
  • Bone Support – 1 tbsp per day
  • Minerals Of Life Trace Minerals – 1 tbsp per day
  • Natren probiotics – high dose
  • Cycle on and off (2 weeks on, then 1-2 weeks off) these immune strengtheners: Astragalus, Maitake
  • L-glutamine – 1,000 mg per day
  • N-Acetyl Glucosamine, or if he has intestinal inflammation or pain issues, then MucosaHeal instead – follow label directions for adults
  • B-Complex vitamins – 1 per day
  • Houston Enzymes
  • MetaCleanse – likely will only need a small amount, or 1 tbsp. chia seeds mixed in liquid

Medications and Medical Treatment

• Most people are on at least one type of antibiotic and once they are on it, they stay on it for life. Those who have tried to stop the antibiotic have found that their skin afflictions get out of control.
• I know of at least a couple of individuals (and another one here) who are attempting to minimize treatment using antibiotics. One person is on antibiotics every other month.
• Many are also on an antifungal to keep yeast under control (given the constant antibiotics use).
• Many are on steroidal creams for eczema. One person feels that Triamcinolone Acetonide works the best for them.
• Some individuals need to receive intravenous immunoglobin (IVIG) treatments (sometimes as often as every 28 days). Some are on Hizentra (which is an IGG immunglobin drug product that you can administer at home).
• Individuals with Job’s Syndrome should not receive live vaccines. Read here for more information about vaccinations and Job’s Syndrome.
• Make sure that you are under the care of an immunologist, or a doctor that is familiar with this syndrome.
• Many individuals receive care at National Institutes of Health (NIH) in Maryland and participate in research studies about Job’s Syndrome.

Concerns about long-term use of antibiotics

The comments of these individuals helped put some of my concerns to rest about building up resistance to antibiotics. (I still hope that my son doesn’t need to be on them for life, but if he does, it’s good to know that this treatment has been viable for others).

• One individual has been on the same dose of the same antiobiotics for 20 years, and in addition rotates between two different antibiotics to avoid building up a resistance to the antibiotics.
• Another individual who has been on antibiotics for over 20 years has needed to rotate between different antibiotics as she did build up a resistance to the antibiotics over time. She noted that she is now back on an antibiotic that she had built up a resistance to in the past, and it is currently effective.
  

Community

• Join the Yahoo or Facebook support groups (here and here) for Job’s Syndrome. The International Patient Organisation for Primary Immunodeficiencies also has support for Job’s Syndrome here.
• Madison Dawn’s (8 year old with Job’s syndrome) CaringBridge website here.
• Good news story about Ethan Richarde after receiving treatment for Job’s syndrome here.

Good news

• IgE levels can decrease with treatment.
• Food sensitivities can decrease with treatment (as IgE levels decrease). In fact, food allergies are not necessarily associated with Job’s Syndrome.
• Grimbacher et al. 1999 has shown that IgE levels declined with time in 6 out of 30 individuals (20%) and declined to  normal range in 3 out of 30 individuals (10%).
• When properly managed, individuals with Job’s syndrome can live long and productive lives. (I’ve read of individuals who lived to at least their 60s. I’m hoping that my son will live an even longer life).

Living a full life

• Take one day at a time.
• Build a support network of family and friends.
• Don’t let the diagnosis stop you from living a full and productive life.
• Follow your dreams and your bliss.
• Incorporate meditation, yoga or other relaxation techniques into your life.

General information about Job’s syndrome

• Half of the cases of Job’s syndrome are inherited; half are caused by a spontaneous gene mutation.
• Easy to understand chapter about Job’s Syndrome here.
• Abstracts of scientific studies can be found here.
• Interesting scientific study quantifying IgE levels and other characteristics of individuals with Job’s syndrome here (Grimbacher et al. 1999)
• There is an autosomal dominant form and an autosomal recessive form, and they are considered different disorders.
• The autosomal dominant form is characterized by elevated serum IgE, eczema, and recurrent skin and respiratory tract infections, together with several connective tissue and skeletal abnormalities. My son probably has the autosomal dominant form.
• The autosomal recessive form is characterized by elevated serum, IgE, eosinophilia, vasculitis, autoimmunity, central nervous system symptoms, and high mortality. It is not associated with skeletal or dental abnormalities or pneumatoceles.   Scientific paper here.
• Good description about the immune system in individuals with Job’s Syndrome here.
• Easy to understand article comparing Job’s Syndrome (Hyper IgE Syndrome)  to other immunodeficiencies. Job’s Syndrome is considered a primary severe combined immunodeficiency, with a T-cell defect here.
• An interesting scientific paper comparing Job’s Syndrome to food allergies and eczema in an infant here.
• In addition to the STAT 3 gene mutation, DOC-8 gene is another gene mutation responsible for a form of Hyper IgE.

If you have Job’s Syndrome, or are parenting a child with Job’s Syndrome, please feel free to share your tips. This is a living list and I will be adding more ideas and tips with time.