I have been recently doing a lot of research about this disease that has plagued my 9 year old son. He has been sick off and on since he was 3 weeks old. Lung infections, aspirated pneumonia, RSV virus, staphylococcal infections, and severe Eczema and food alergies have been all we have known through the years. He also is affected by low growth hormone and is below the fifth percentile for his age. (Three years of Protropin injections didn't help his growth any.) They hardest part of dealing with this disease is the chronic Eczema, approximately 85% of his body is covered, he has lived with it all of his life. I have tried everyting, been to many doctors and feel like there is absolutely no hope for my son to feel normal. He has low self esteem because of the appearance of the sores that cover his body.
As far as my experience with him I know the things that are NOT causing it like: dust, laundry detergent, foods, dust...ect. I just want to know how to make it go away and prevent it from coming back.

hi jamie,
i'm very sorry to hear about your son's problems.
i cannot help you myself, but i would advise you to repeat your post on the pia website, which is much more active and i am sure you will find someone there who can advise you.
the url is

pia.org.uk

good luck with your quest, and i hope you can get the answers you are seeking
take care - john

Hi Jamie! If you're still having problems, please feel free to write me. I'm a 35 year old Job's patient and can certainly relate to your situation. I'd be happy to help however I can.

Maureen

Hi,

My two year old has just been diagnosed with Hyper IgE syndrome. He has had 2 skin infections but no other illness to date. Can you tell me when you were diagnosed and what your experience has been like? How do I best help my baby?

I would really appreciate any information.

Thank you so much,
Lisa

I am a 51 year old grandma, who was diagnosed with Hper IGE about 12 years ago, after finally coming to my wits end suffering with recurring boils and chest infections and other minor stuff. Always at the doctors. I am permanently on Cotrimoxazole (a low dose bactrim used as a prophylaxis) which has kept the boils and chest problems away. Stress does play a huge part in the function of our Immune systems as I have found out first hand.
I suffered also for many years with eczema of the perineum, tore myself to shreds night after night. Tried cortisone injections into the area from some time, but gave up on those as the relief was only temporary. I finally went to a Health Shop, they started me on Flaxseed Oil capsules, to take internally, and to put on topically, a 50/50 mixture of calendula cream and Ti Tree Oil. Voila, I have not had it back, and it is now about 8 1/2 years. Do find a good Natural Health Store, and look at other options. Not everything will work for everyone. When diagnosed, not even the Doctors could give me information. (Nothing on the web back then) I did my own research and I started teaching them. Every new Doctor got a copy of the info I had. I would tell them what the problem was, how to treat it, and what I needed. Knowledge is Power. We don't know where mine came from, no family history, just a quirk of nature at conception, my children are fine, (son's level slightly elevated) and my grandchildren also appear to be fine.
I live in New Zealand, I know of no others here, one young girl I had the pleasure of meeting, sadly died a few years ago. One in a million they say we are.
I found the best thing is learning about it, accepting it, doing what we can to help ourselves, and just get on with it. As I said earlier, Knowledge is Power!!!
Keep in contact, will be nice to have someone to share things with.

Jan

My son has just been diagnosed with Job's just 2 days ago and I am looking for help on what to expect. Kevin is 4 1/2 years old and I am a scared mother. Please contact me with any info Thanks.
Sincerly,
Sandy

Hi
I am 49, Canadian, and have only been diagnosed with Job Syndrome a year ago. It all adds up, recurring infections and excema etc, but generally my health was good and all that was ever prescribed was cortizone creams so I gave up on doctors.
Last year I finally went to an allergist to get to the bottom of this. My skin infections were getting worse.He diagnosed JS.
Now I have gone to the gp armed with research off the web, and am going for futher tests. I have been one year on alergy shots and following allergy restrictions but nothing has changed. Im on antibiotics every other month.
I am looking for some inspiration. Jan, I will have a look at what you tried.
Has anyone considered medicinal mushrooms such as cordycep or reishee? they are to strengthen the immune system. I have been taking these capsules for 3 months but dont notice any change.
for my skin, I wash with phisohex and work at keeping clean, I use shea butter or vaseline or zincofax a zink based diaper rash cream for rash and scratches.
thats all Ive got.
Ruth

I have recently had blood tests for IgE and IgG and one other. All but the IgE were normal but at the high end. IgE however, was over 4000 on one test and 5500 on a second test. This certainly explains my entire medical history. I did not have the skin infections my father had chronically but did have a bout with boils as a child for several years. I have chronic sinus infections and get frequent bronchitis needing antibiotics two or three times a year that can last for a month or more. I have started to increase my use of vitamins and supplements but need to know how to test my diet to see if I can change the food I eat. After my test results came back I started to clean every surface in my home with bleach in the water to eliminate bacteria on surfaces and even add a little to the diswasher. I had all my carpets removed and the floors refinished to reduce dust and mold surfaces. I also tested positive alergic reactions to dust mites and animal dander as well as a couple of tree pollins. I have always been allergic to penicillan and sulfa drugs - will get anaphalaxic shock. Does this mean that the penicillium mold spores will cause me majer problems - its almost as common as aspergilliam - which I also tested alergic to. I have always thought I would likely die from the common cold as I always get an infection when I get one.



Diagnosed with Hyper IgE > 4000.

Hello,
I read your message and I felt very upset about the sitution at your hands. My son is 10 months old. He has severe infantile eczema, reoccuring staph infections, his growth and weigh gain is at only 5-10 percentile always on antibiotics to help his body fight infections, allergic foods he can only have Neocate. The doctor mentioned to me when he was six months old that he may have a rare syndrome called job syndrome. They did not want to test for this syndrome at the time but tomorrow at his follow up appointment I am going to ask them to test him so I can understand why my son is always skin and itchy. If you have any suggestions please let me know. My email address is angelinaslack@sbcglobal.net.

Angelina



Angelina Slack

Hello-

I am very familiar with your sons pain. I have one of the worse cases of Job Syndrome. The only real thing that has helped me is taking out dairy products from my diet. When my skin starts to "act up" I also use alo vera. Stay away from antibotics and other "white" medicines as much as you can. Have your son try natural alternative medicine. Whether it's Dr. prescribed or alternative medicine; it's all trial and error anyway. I just turned 29 and have severe problems due to all of the medicine I have taken throughout my life. I hope some of this info helps..

Laura

Having just read the other contributions about this condition, I now know that other sufferers have some of the same symptoms which I can sympathise with. I have a very severe form of Job's with my IgE count greater than 20,000. The first symptoms occurred at 3 days old and the rollercoaster ride has continued since. The skin itching is difficult to control and is present 24 hours a day. I have not found any effective treatment yet although much has been tried. As I get older the chronic condition of Job's is now leading to secondary problems. I have just been diagnosed with fibromyalgia and have developed cataracts (cause unknown but is probably related to Job's or the medication I have taken for years. I have never taken long-term steroids so this is another mystery).

The repeated lung infections have left me with bronchiectasis and only a third of my lung capacity. Surgery for incision and drainage of abscesses has always been a part of my life. A lot of doctors have never heard of the condition and it can sometimes be difficult for them to accept that you know more about your disease than they do! After many years I now have a supportive team of doctors with whom I have a good rapport and we make decisions together, as they also know that I have to rely a lot on my "gut instinct" regarding diagnoses and treatment.

It is important to stay positive and try to enjoy a normal life in spite of the problems. Always keep your sense of humour - you'll need it because you eat a lot of hospital food!

I feel that one of the problems with this syndrome can be the feeling of being alone or isolated because there are no guidelines with regard to treatment or its outcome. I need cataract surgery as I will go blind in the next few months without it. However, neither I nor my doctors know of any patients with this syndrome who have had eye surgery either successfully or unsuccessfully. I would be very glad to hear from anyone who does have any information otherwise the final decision will once again be mine alone, and the choice is to risk post-operative infection of eye or brain and lose my sight, or just allow my sight to deteriorate until I can't see anyway. Not much of a choice really!

I would be happy to exchange information about this syndrome and would be interested to learn of any treatments or medications that have been successful.

Hello,

I am from Hungary, and I have a 3.5 year-old son with Hyper IgE-syndrome.In Hungary he is the fourth person with this disease, and we don't know the other three patients. I would be happy if I could change my experiences with others. If someone wants to contact me,here is my e-mail address:kreheni@enternet.hu

Dear Jamie,

Could you solve your problem with eczema? I can offer you / and everybody / BIOPTRON-lamp, produced by Zepter, Switzwrland. It"s excellent!

i have found sun lamps very useful in the past is the biotron lamp a form of sun lamp heni thanks.

Hello Sparks,

Yes, the Bioptron lamp is a sun-lamp. It's excellent for eczema, fungus, otitis, scars etc. We use it twice a day, and it helps!
Heni