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Very High IGE Levels

My son (14) has a IGE level of 33,000 - he has severe eczema, asthma and many allergies.  We did have a specialist examine him for Hyper IGE (Jobs syndrome), which he does not have.  Is there any other disease that would carry such a high IGE level, or can this just be severe allergies???  
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I am the lone ranger? with a chronic fungal pulmonary condition since 2005. My IGE is only 2100 - which was very high for me. I am treated occ. with steroids and antifungals. They help but finally changing my diet - no carbs - as they turn to sugar and feed the fungus - has helped the most - and no bad side effects as with the drugs!
Check with Doug Kaufmann about fungus and all allergies - I learned a lot from him.
March 17,  2011
Helpful - 1
Avatar universal
I'm 56 and have had atopic dermatitis (eczema)my entire life. The worst of it was in my mid thirties with an IGE count of 26,000. Believe me, I was a bloody mess! I've been taking 50 mg of Atarax and 1 tab of EES-400 daily for the past 25 years (taking up to 4 tabs a day if I flare up) and its improved my quality of life greatly. My DIET was pitiful when I was young. I ate out of cans and lived on junk food. Once I began eating plenty of fresh green vegetables (raw and steamed broccoli, spinach, romaine lettuce etc.) eliminating soda pop (I replaced it with Appollinaris German Mineral water) and ALL preservatives (don't eat ANY frozen food) from my diet, my skin cleared up remarkably. I think stress plays a big part too. Try to walk 3 to 7 miles per day. I hope this information helps. W.
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My IGE or 23 is that consider high. And I was wondering what do I was wondering what do I have.
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i am a 21 year old female and i have a high allergy to dust mites and dust, my ige is 2.500
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i am a 21 year old female and i have a high allergy to dust mites and dust, my ige is 2.500
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I m 42 male and got s ige level 3000 what treatment I take plz help me
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HI Jackie , Your eczema and asthma sounds extreme, my 18 year old son has had a very hard time of it too. I know its been a long time since this post but I just wanted to let you know if you dont already about a new drug called Dupilumab that will be available soon and also a new topical...I heard they may be available in early 2017. There is an article about them in the New York Times. I hope you were maybe one of the lucky ones that got involved in the trials. I talked to a woman who said that the Dupilumab worked wonders for her.
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Hi what's dr in Dallas because I'm looking for a dr deal Ige
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Hi..I am 24. Recently i had a IgE Test, since i have been feeling low sensation in my whole body. The result of test is quite odd, as i am having igE value 2384.2 IU/ml. I am failed to understand the reason behind it. Somebody please help me to get it.
***@****.
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Hi Dilwar,
My son is 11 years old with IGE value around 4K since we know. We tried contacting you, will try again.
Please let us know if your contact information has changed.
***@****

Anybody any other treatment also please help.
Thank you.
Murali.
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1 Comments
hi murali / dilawar -  did you find medicine what dilawar was mentioning
Avatar universal
I suffer from similar symptoms and could not sleep more than an hour or 2 without waking from the itch.  However with experimentation I have found that topically I use tea tree oil and when it dries I put zinc oxide all over it.  It does take away the itch.  Orally I take Doxepin, singulair and zantac.  Zantac hits the H2 receptor which none of the other antihistamines do.  The doxepin makes me tired but when I am itching, its a small price to pay.  so I do singulair and zantac in the morning and zantac and Doxepin at night.  I hope this helps
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Avatar universal
Xolair is provided through a specialty pharmacy and there is co-pay assistance.  Talk to your Dr's staff.  Hopefully they have someone who specifically manages the Xolair patients.  Good luck because Xolair is wonderful!  It is an injectable so you will not be able to get it at a regular pharmacy.
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Avatar universal
I was given a script for Xolair, but I can't even find a pharmacy that carries it & I was told if I did find it the cost would be +$1,000.00
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I have been fighting high IGE ( undetected for 7 years ) caused from a parasitic infestation ( undiagnosed for 4 years ) ((toxocariasis )). My IGE was at 74,000 at one point. I have had asthma more most of my life but was under control until this. Atopic dermatitis has been what I am being treated for right now. Started with methotrexate which "burned" the inside of my mouth. It took months before I could intake anything slightly acidic. Was switched to cylosporin (300mg / day), 10 mg of prednisone a day which helped a little. I was put on the highest dosage of IVIG ( every 3 weeks ) for a year and that helped a bit. As time went on, it helped less and less. I have just finished the testing for xolair. My IGE dropped to 24,000 just before I stopped the IVIG treatments. My last IGE results were 299 ( still don't believe it ), but I can not be a candidate for xolair if IGE is over 300. Over the past 7 years I have had 2 heart attacks and a couple of strokes. I have lost proper function of my legs and hands, I now walk with a cane for balance or a walker if going any distance. Our lovely government has denied me a pension twice since my "condition" of atopic dermatitis does not qualify me. They can't see past that part of my application. Hoping xolair helps
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Avatar universal
In 09' I was intubated and in a coma for 4 days. Diagnosed with aspergilosis. My o2 sats were 89% and I was intubated so I can't even imagine the gentleman who had an o2 sat of 55%! I had my IGE levels drawn in 2010 I think and they 13,374. This was the highest ige that the allergy clinic has ever seen and I was determined untreatable because they were afraid shots would cause anifilactic shock. I have not had my ige levels checked since. Whats the point? They wont treat my allergies so they are obviously going up.  I am a severe asthmatic. Have been on prednisone for 3 years straight. My eczema has gotten so bad that I have contemplated suicide at times. The constant itching and pain is unbearable. It feels like I am being pinched by the claws of a scorpion ten times a minute in different areas of my body. I have giant HOLES all over my arms and legs as well as the generalized, weeping rash everywhere else from my ears to my toes and everywhere in between. Between my asthma and eczema, I can't hold a job for more than a couple months at a time. I am a nurse and am unable to work as a nurse any longer due to the risk of infection from all of the open areas on my body. I was on methotrexate (chemo drug) for a bit but I had a reverse effect and wound up in a mental hospital from it so be aware of that reverse effect before starting this med. I have such a horrible quality of life. I can't go outside during the day because I can't be exposed to the sunlight. Like at all. Not for 2 minutes. I can't really go to public places because I have reactions to the cleaning chemicals used by the public. ESPECIALLY hospitals. When I DO go to the ER I break out in hives before being seen. I had to sell my horses because of my reactions to them but I WILL NOT give up my dogs. I have poodles and shitzus and they are considered hypoallergenic but I beg to differ. I am allergic to most antibiotics and other drugs including doxepin which ***** because its a helpful medication in eczema. I take 100 mg of hydroxyzine a day with very little relief. I can not use ANY soap during showers. All lotions make eczema symptoms worse. I suffer from severe anxiety which exacerbates asthma and eczema which exacerbate the anxiety. As a teenager I was accused by police officers of being a heroine addict because they were uneducated and thought my eczema were track marks from shooting up.As a child in elementary and middle school I came up with a story that I had been burned in the past so they wouldn't make fun of my different skin. A terrible story, I know, but it worked. Even nurses don't seem to educate themselves on the signs and symptoms of eczema. Sometimes I believe I am THE ONLY person in the whole world that lives like this.
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Avatar universal
Try changing his diet it is a lot cheaper and SAFER!, my doctor recommended cellcept but I declined after finding out about it's side effects. I'm now 36 and as a child I looked like a monster because of my hives and eczema, had a HORRIBLE childhood, it was quite sad how people treated me but anyway that is life. I changed my diet and my skin has improved 70%, but I still get hive/eczema flare up in the spring. As for the diet he is most likely allergic to wheat, soy, eggs, shellfish, nuts, dust mites, and likely certain trees like birch, oak and others that their name escapes me. I know trees are hard to avoid but food you have control over so start with that.
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1 Comments
My hives and eczema just started about 3 months ago.  I am 36.  I had a blood test and I am allergic to all of the things that you listed.  I am currently changing my diet.  I hope I have some success.  
Avatar universal
Hello,
I am 24 years old, I have problem with high level of total Ige. First doctors thought that I had Hyper Ige syndrome (Job syndrome), because I had pneumonia when I was 3 months 8 and 12 years old. I had EBV virus (14 years old) and pneumoniae chlamydia (15 and 19 years old). After 19 years old (3 month from treatament pneumoniae chlamydia) I becoming have a many problems with my health. I was in hospital, with suspected of acute pancreatidis, but this diagnose wasn´t suspected. I had problems with immunity. But now, doctors know that I have alergie, asthma, GERD, atopy, migraine and celiac disease Marsh 3a. I have diet and Asmanex and total Ige dropped from 1993 to 953 for the year. My eczema is much better than before.Is there anyone who has similar symptoms?  Do you think it is possible link between celiac disease and high level of Ige? I am very sorry for my elementary English, I can´t speak English very well.
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Avatar universal
My 6 year old son is being recommended for Xolair.  Of course,we worry about side effects and the FDA says approves over 12.  But I also think it's just FDA red tape and it will eventually be available to under 12.  His eczema is year round and very severe covering his whole body.  I wanted to see what your experience has been since you have a similar age child.
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Avatar universal
Have you been checked for tick born infections, such as Lyme disease, bartonella or babesia? I have all of these and you have some of the symptoms. Ticks can be as small as a poppy seed and less than half of those bitten get the EM rash at the time of the bite. Or if they do some do not notice or mistake for a spider bite etc. infectious disease doctors can test for this however I recommend a Lyme literate doctor because they specialize in tick born infections and are the experts of tick born infections. It is their focus and passion. Here is a link to ILADS.  http://www.ilads.org They can help you find a Lyme Literate Doctor in your area and they have many resources on their site. Good luck, God Bless and prayers for healing!
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Avatar universal
Anyone have any luck using cellcept? We have been battling eczema with our  son for 9 years and recently it has gotten much worse. His IgE levels are 21,000+ . He has abscesses over his body and nothing besides atarax is helping. He can't continue to sleep through life and miss school. No food allergies and celiac panel was negative. Allergies to dust dogs, horses, and grass. History of repeated sinusitis and asthma. Hospitalized once for pneumonia. Any help would be greatly appreciated.  
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Avatar universal
Hi, all, this board seems to be going on for ages. There was one girl there who said she felt stiff and brain fogged and dizzy....exactly how I'm feeling. My ige level is 1536 and weirdly enough my sisters level was high too... Odd? But we both noticed breathing issues, mine were more slightl then my sisters. I also had my vitamins checked. And b12 was a little low. I'm hoping if I take some b complex it will help with everything. ;) I hate going to docs cos they say il my tests are fine but I feel like I've run a marathon some days when I wake up.
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Avatar universal
Hi Roxane777,
My husband has been fighting a similar battle chronic autoimmune urticaria they are calling it with a delayed pressure urticaria component. We have done everything from allergra to predisone to cellcept to cyclosporine (leukemia drug). We are now looking into Mayo clinic and xolair. We are drawing Ige levels tomorrow morning- nothing else has come up. Did you have any luck with xolair? I see your post was in 2011 very curious where you and your husband are at this point-
thx CK
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3105611 tn?1341444169
Hoping to discover my problem today, I have a 3,650 count, which Im almost embarrassed about posting seeing some of the other totals here, however, my asthma attacks are proving fatal
07- Summer,on the way to football practice, I play and coach, had to turn around and go home, took 5 treatments, ambulance called, pulse 02 (55%), passed out, 8 day coma, no memory loss but mass motor skill reset,
had VERY bad pattern eczema (genetic- same spots as my dad) and was unable to wear shoes in the 7th grade for 3 weeks.
'12 Xmas Eve, 2 days really struggling, called roommate to come take me to hospital, 90mph, passed out en route, arrive 0% pulse 02,for recorded 20 min, convulsions, 2 day coma,

'13 February, failed SSi lung test, lost benefits, pneumonia for 4 months, took prednisone to get to clinic, referred to university, for PTSD and pulmonary eval

currently experience odd dermatome irritation, (softball sized patch centered on left scapula itches very badly prior to attacks

IGE levels 3,650
CT Scan, - mild scarring R lung
Spirometry tests (2) , Baseline 60%, post medication 60%  :(
2 sleep tests, discovered apnea at REM onset, so ive been sleeping almost 2 hrs a night for about a decade

prednisone is my only recourse, but there must be some middle ground
between suffocation and scaring people with prednisone rages.
evicted, homeless,  cabulance wont pick me up because I have no phone, (15 days now, knee deep in affidavits from Univ physicians,
they also wont take me to counseling and my clinic dr, the last one of 5 who would actually commit to treating me, is RELUCTANT to prescribe more prednisone without more results,  so im being oxygen (rescue med) rationed for "safeties sake'

between insomnia from nebulizer treattments and prednisone, and the sleep apnea I slept a TOTAL of 12 hrs in the 7 days prior to my 2nd coma, and slept in teh bathroom sitting up, the two days prior, lying down makes it worse.

any thoughts, theories had allergy test, wildly allergic to lots of things, -birch, blue grass, cats, dogs,
-negative for aspergillosis
everyone seems to be hoping someone else will do something,
and i can no longer afford the 10% drop in lung function per receptionist, fighting to get anything done, without even medication to rescue myself,
and little to no faith in ER since my condition is so bizarre,
specialist w 6 months of tests have no clue, what chance do i stand with an ER doctor with 45 seconds notice.?

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Avatar universal
i am the patient of asthama since i was 7 years old and now im 29years old, i always had skin problems with me, last year my doctor adviced me to get tested the IgE, so my IgE levels were about 4000, from now onword i get myself tested after every 30 days and my IgE levels are between 3500-5000, i am constantly having the anti allergy tablts but no result, my doctor dont want me to take Xolair, can any1 tell me what should i do????
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