I was diagnosed with Jobs Syndrome when I was a young teenager in UCSF. I have never met anyone in my life with this disease. It's also very hard to find a doctor that has even heard of it! If anyone has been diagnosed with Jobs...I would like to know what symptoms we might share. I get so depressed sometimes because every treatment seems to fail. Does anyone have any advice?

Hi, my brother (he is 40) was diagnosed with Jobs Syndrome a few years ago. I have been trying to find some research and/or information that may help with dealing with the symptoms. I do not know all his details as he does not share them, I do know that he has been taking Cortisone for quite awhile and as a result it has greatly affected his weight, he has been very uncomfomfortable and retaining water. As a result of taking the Cortisone for so long he has developed Cataract's. If he changes or goes off his medication he develops wounds and I have seen him in some very unhealthy and uncomfortable states.
I am trying to email some of the hospitals to see if any of their doctors have information on how to deal with his disease. Like you , my brother has seen every doctor in town and none of them seem to know very much nor know all about the disease.

I will forward this to my brother and see if he will communicate with you as I believe it would be beneficial to you both.

I hope you enjoy the holidays and keep yourself healthy!!

Romy Frezell

Hello,
My name is Jessica and I've been sick since I was 2. Up until 2000 doctors were stumped. I had been to doctors in Florida, Texas, South Carolina, and Georgia- to no avail. At the age of 15 I was sent to Texas Childrens Hospital in Houston Texas where I was informed that I just might fit the bill for Job's syndrome. Still 5 years later I have yet to be officially diagnosed. After years of research I have come to believe that I have Hyper IGE syndrome, when I asked my doctor she said my levels were about 2,000 shy of being high enough. They certainly are elevated, but since I'm 2,000 short I just tell people at the ER and new doctors that I have advanced IGE syndrome. I have all the other symptoms and have even received IVIG treatments for a year of my life. I have been put on numerous experimental drugs in my prusuit for a cure. I am currently 20 and would love to talk to anyone who needs a second point of view or talk about all the ailments that go hand in hand with this disease.

hi, my name is na'li, i am 35 years old, and have been experiencing an unusual health condition. I have seen an Endocrinologist, a Dermotologist, a Gynocologist, an Asthma/Allergist and numerous interns...no one is able to determone what is wrong with me...they only agree that SOMETHING is going wrong. My IgE is in the high level...but not super high...it is about 300. i am researching on my own now and came across your threads, and i am wondering about this "job's syndrome".
Can both of you share some of your symptoms so that i can see if they match with my own??
thanx!...one of my biggest symptoms is excessively dry skin...past regular exema or pruitis...sometimes it is very painful.

My symptoms are so random its hard to mention them all. If your IGE's are only 300 then you don't have Job's. When you look the disease up, in order to be diagnosed you have to have at least 20,000. However, I sincerely hope that doctors can give you answers soon. I am only 20, but I went a very,very long time without a diagnosis and I personally think thats whats hard. I got to where I could handle, almost predict my body and what it would do. But not knowing how to explain it to people or having a name to call it was very difficult for me. I have severe asthma and eczema, as well as the immune disorder. My symptoms are incredibly dry skin, I'm loosing some pigmint, I also have problems with scratching...the itch is so bad I cant sleep at night. I have acid reflux disease, and I'll allergic to EVERYTHING. I wake up with swollen eyes and stuff sometimes. I have herpes outbreaks on my hands and arms, neck, knees. (That usually happens right before I get really sick). I have the asthma. I suffer from migraines as well. I hope I've helped a little. If I can give any more information, let me know.

How are you handling you being sick...mentally?

My son is 15 and was diagnosed with Jobs Syndrome at age 5 when he was hospitalized with pnuemonia. He has been on a regimine of antibiotics and antihistimines ever since and these have helped to balance the infections and skin itching. 3 years ago he began participating in a clinical study at the National Institutes for Health in Bethesda, Maryland, and we have since learned so much about this Syndrome -- some of the symptoms are baby teeth that don't fall out, simple infections that cause strange & difficult to treat reactions, osteoporosis, and much more. This "education" has helped Nick tremendously to accept his condition as just part of who he is, and it has comforted him to know that there are others who have it. I believe that the clinical study is still open, and the NIH pays for your travel and lodging to participate. The doctors and other healthcare professionals there are outstanding and compassionate. It's easy to enroll in the study, except that you do need a doctor to diagnose Job's and recommend you to NIH. Your doctor can contact Joie Davis joie_davis@nih.gov or Alan Fitzgerald 301-402-5178 (both at NIH) to find out more about the study. Here is a link for more information on the study, with links to information about the condition:
[clinicalstudies.info.nih.gov]
Understanding this condition has made a tremendous difference in Nick's life. If you can't participate in the study, the best type of doctor to look for is an infectious disease specialist (Job's isn't infectious, of course, but it does present special complications in infectious diseases). Don't give up!!!

Hi my name is Amy. My 10 year old son Bailey has been sick on and off for two months and we have been trying to figure out what is wrong with him. He has very healthy blood work except his IGE level is high! It started at 1429 in Jan. and now has increased to over 4,000. We have just been referred to an Infectious Disease doctor and will be seeing him the end of March. He thinks by looking at all of the info on Bailey that he has Hyper IGE, or an over active immune system. I know very little about this and was wondering if you could share some of your son's experience with me. Bailey has had severe constipation, some vomitting, loose bowels, some heartburn. He isn't allergic to anything except dust, trees, grass and only at a low level. We have been so worried and are so glad to finally know something. I hope we are being sent to the right type of doctor. Please fill me in on anything I can expect or anything that may help! Thanks, Amy

I beleive we share some of the same symtomes. I will be later this year and have come to know my body and what it will do more or less. The most common thing that I ALWAYS suffer from are fevers...very random and very high. I also have chronicle sinus problems and asthma (they go hand in hand). I do have acid reflux disease, it has already landed me in the hospital twice... I also have problems with acne, although it has gotten better wihin these last 5 or 6 years, however when I was younger it was horribly bad. Another Jobs Syndrome charactoristic that I have is very flexible joints, if I do not stretch they ache (artiritis is very very common in Jobs Syndrome patients). I have problems with candidis...fungis if you will. Every few years I have a thumb or other finger nail that goes bad. It takes several months of "liver killing" medication to fix it. I have had several invasive surgeries because of Jobs Syndrome. 12 surgeries to be exact. The most major, among the 12 were; revmoval of 1/3 of my right lung, removal of my right ovary and fellopian tube (4 benign tumors), and several "experimental" sinus surgeries. I do suffer from all sorts of random things as well.

You asked how I was mentally...I do get very depressed every so often, when I was younger especially when I was in my early twenties... I don't know what you situation is like but for me it has been very hard because EVERYONE growing up around me has been very healthy. Since I was a baby I was branded "The sick one". I would mis A LOT of school. I would spent AT LEAST 3 months out the the year in the hospital. When I went to college I had to rearrange my schedule and get special permission to miss classes from the Dean. When I was pregnant I had to use and wear an Iv on my left arm for 2 1/2 months to work...that was very hard and embarrassing. Mentally and physically I still struggle a great deal. It is very hard writing all of this but I do it to help other people like you and I. For a very very long time I thought I was the only one alive with this condition but know I know the 2% of the worlds population share this very unkind disease with me. My advice to you is NOT to get "officially" diagnosed. Once you are diagnosed it will be extremely hard for you to deal with medical insurance...that is, if they will even cover you. If you have any other questions or would like to keep in touch for moral support or whatever...my email address is mireya_762002@yahoo.com

My major chronic problems I have are:

Random High Violent Fevers
Chronic Sinus Infection
Nuemonias and Broncitis
Achey Joints
Allergies to many fruits and some nuts
chronic fatigue

Conditions I have suffered more than once throughout my life:

swollen glands
severe coughs
Asthma
Random Infections
Fungis in the Nails
Acne
Loss of hair
tumors
cysts
Acid reflux Disease

Hi, I was diagnosed just this last year (58 years old). My IgE levels have been as high as 6400 and as low as around 4000 when I have been on prednosolone. I have had asthma my whole life but it has become chronic and uncontrollable the past few years. I get many upper and lower respiratory infections. I had a bout with boils when I was a child. Thank god that went away. I constantly go up and down running low grade fevers. I am allergic to everything that has hair, fur or feathers - and insect droppings and dust mites and dairy. I have to spend all my waking time controlling my environment. I am on an antibiotic at least four or five times a year for two or more weeks at a time. Right now I am on prednosolone and an antibiotic for a month. I start Xolair treatments this thursday provided I am not showing signs of any infection - like a fever. I am taking fexofenodine, zyrtec and singular and use one steroid inhaler and a nebulizer for my fast acting action at least four times a day. I always carry albuterol with me and benedryl. I never know which asthma attack will kill me but I know one of them will. Sometimes the depression is so bad I just sit and cry.

Diagnosed with Hyper IgE > 4000.

Hello, I'm a 28 yr old female who was diagnosed with Jobs Syndrome at about age 2. Living with it has been quite challenging to say the least. I have never met or spoke to anyone who shares the disease. Anyone who might like to discuss the matter. Please feel free to contact me. It seems we that have it also share the same problems. Infections, fevers, sinus problems, asthma, skin rash, pneumonia and bronchitis. Living on antibiotics or trying the latest thing to hope it may help.

Hello, how are you? I'm a mother of a 3.5 year old child, who was diagnosed with Hyper IgE syndrome at the age of 21 months.We live in Hungary, and my son is the fourth person in our country suffering from this disease. Unfortunately we don't know the other three patients.It would be nice to chat about our problems with you, and others. If you want to write, my e-mail address is: kreheni@enternet.hu

Hello Romy,

I have just seen your message about your brother who has Job's Syndrome. I also have this disease in a very severe form and I have also developed cataracts but the cause is unknown. I have been told I need to have cataract surgery but there is a very big risk of infection which could mean I will lose my eyes completely. I am desparate to know if your brother has had his cataracts operated on and, if so, what was the outcome? If I don't have the surgery I will lose my eyesight anyway within the next few months.

I would be happy to correspond with your brother about the disease and treatments I have tried.

Thank you for any help you are able to give me.

Kind regards, Carole

Have you tried colloidal silver? It's a broad-spectrum antimicrobial/antifungal with low toxicity (none, really), and it's relatively inexpensive.

I've used it with success against several long-term chronic infections.

You can get it via the internet for $70/gallon, which should last about a year. It can be used topically for things like sinus infections and athlete's foot, but you can also take it internally. As I said, it's non-toxic in reasonable dosages.

Hi Carole,

I'm new to this forum. My 8-yr. old daughter has Hyper IgE Syndrome, and I've just recently began learning just how involved this rare disease is. My daughter's IgE count peaked at over 15,000, but is currently between 12,000-13,000. She's allergic to every food (literally). She's got asthma and excema. She's had several bouts of pneumonia. She's had the boils and MRSA. She's got the hyperextinsible joint and the double row of teeth. I'm curious to learn from older Hyper IgE patients who have dealt with this disease longer. I'm curious to know what may be in store for my daughter. I've read that in her teens many more changes may be due to come, such as slight changes to her facial appearence, scoliosis, etc. Any help (from anyone) would be greatly appreciated.

Does anyone here have an IgE count greater than 12,000? My daughter's is greater than 12,000 (used to be greater than 15,000). Curious to know what's in store for my daughter.