Raising a Sensitive Child

Nourishing Body, Mind and Spirit

My son’s IgE levels have dramatically decreased!

20 Comments

It’s been a year since we found out about Moses’ diagnosis of Hyper IgE syndrome (Job’s syndrome or HIES), and we recently received some amazing news about Moses’ IgE levels.

To put this into context, IgE refers to immunoglobin E.

Immunoglobulin E, a class of immunoglobulins that includes the antibodies elicited by an allergic substance (allergen). A person who has an allergy usually has elevated blood levels of IgE. IgE antibodies attack and engage the invading army of allergens. The E in IgE stands for erythema (redness).

Normal IgE levels would be less than  130 IU/mL or 312 micrograms/L.  Anything over 2000 IU/mL is considered “hyper” (although doesn’t necessarily mean that one has Hyper IgE syndrome, which refers to a specific gene mutation).

Last year, my boy’s IgE levels were tested to be between 59,766 and 70,000 IU/mL, the highest IgE levels that I have been able to find both online or in the scientific literature (see Table 1 of Grimbacher et al. 1999 to see the IgE range of 30 individuals with HIES).

A couple of weeks ago, his IgE levels were quantified and it is now 22,311!!!!!  Compared to the last time that it was measured,  this means that my boy’s IgE levels have decreased about 48,000, and have decreased by 68%!!!!!!!!!

This is more tangible and quantitative evidence that my boy is healing. His pediatrician was quick to remind me that his IgE levels are still considered very  high, and he is not out of the woods yet. But really, in one year, his IgE levels have come down considerably. An amazing change. (See Figure 3 of Grimbacher et al. 1999 to see examples of IgE levels declining in six HIES individuals. No one in this study demonstrated such a remarkable decline in IgE levels in a period of one year, although there are examples of three individuals whose IgE levels eventually declined to normal levels by the time they are adults, which provides me with much hope).

As a result of his IgE levels decreasing, his allergies and sensitivities are decreasing, his lungs are healing (less asthma) and his skin is healing. Woo hoo!

Since his IgE levels are still considered high, we are continuing with the prophylactic antibiotic and antifungal (something that I’m not a fan of, but his doctors and DH feel strongly about — read more about our decision to start the prophylactic medication here). I’ve agreed to continue with the antibiotic and antifungal until his IgE levels are less than 2,000, so I’m a bit disappointed that we’ll need to continue with the medication for another year (since his IgE levels are only measured annually). We’re also continuing with miracle mineral solution (MMS) (a natural antibiotic / antifungal), but DH wants to continue with the pharmaceutical antibiotic and antifungal as well.

Still, I am celebrating our daily successes, and know that we are definitely on the right track.

I am holding a strong vision that Moses will one day have a normal IgE level — hopefully sooner than later.

Thanks for joining me in this vision.

November 17, 2011: Even greater news. During Moses’ stay in the hospital, they re-measured his IgE levels and it’s now 16,612 IU/mL, which means that it decreased by 5,699 in approximately one month, and it’s decreased 76% in the last year. Woo hoo!!!

November 16, 2012: I’m disappointed to say that Moses’ IgE levels have increased since it was measured a year ago, and it’s greater than 20,000 IU/mL. Unfortunately, the lab didn’t quantify how much greater than 20,000 it is, even though the allergist asked the lab to quantify the IgE level. I’m disappointed, but still holding strong to my vision of Moses’ healing.

November 5, 2013: Moses’ IgE levels were measured and it’s still greater than 20,000 IU /mL. And yet again (!), the lab didn’t quantify how much greater than 20,000 it is. Ugh!  The scientist in me is upset to be missing this data two years in a row. And we generally only measure his IgE levels once a year. Oh, well….  On the good side of things, overall, Moses is doing well, and is thriving even with a high IgE level. Of course, I still pray that his IgE levels will decrease with time.

August 28, 2014: Moses’ IgE levels were measured and they have decreased. It’s now at 18,044 IU/mL, so less than it has been when it was measured during the last two years. Yay!  It’s still crazy high, but I’m really happy about this news!

November 2015: Moses’ IgE levels are greater than 20,000 IU/mL (they didn’t quantify the exact number), but it’s greater than it was the last time it was measured.

October 2016: (Moses wants to be called AJ now). AJ’s IgE levels are 33,000 IU/mL. Nonetheless, in the last year, he is now no longer allergic to sunflower seeds and pecans, so that’s good news.

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20 thoughts on “My son’s IgE levels have dramatically decreased!

  1. This is fantastic news!!! Nay, FANTASTIC news!! Can’t wait to see what another year of healing has in store for little Moses. (In a way, I wish that we had a way of “quantifying” Adam’s progress too.)

  2. im sorry if I missed a post but why did you stop the MMS and go to antibiotics instead?
    thank you so much ahead of time for answering

  3. Hi Lively Mom: Thanks for your encouragement and support!

    Channa: We are continuing with MMS as well. My compromise with DH is that we are continuing with the pharmaceutical antibiotic / antifungal (to make DH happy) and MMS (to make me happy). My hope is that once Moses’ IgE levels are down, I will be able to convince DH to stop the pharmaceuticals, and maybe we’ll add an additional antimicrobial, like oil of oregano.

  4. Hey Janice!

    Oh wow! Now this is truly wonderful news…Moses IS healing!

    You’re healing intuition is quite amazing my friend…

    I love your posts as they share the realities of healing a sensitive child – the amazing ups and the real challenges associated (mental, physical, emotional and spiritual).

    Keep on trekking my friend! Your journey is an inspiration to other mothers.

    Love to you
    Aliki

  5. I share your joy in Moses continued healing! I also appreciate you sharing your compromise with DH on the approach to follow. Those negotiations are sometimes so exhausting. I pray that Moses continues to heal and fulfill your vision!

  6. I find this very interesting.
    What type of fungus infection does Moses have? (as diagnosed by doctors)
    Also, what type of tests were carried out to come up with the diagnosis?

  7. Hi Sven:

    Moses has been diagnosed with Hyper IgE syndrome or Job’s syndrome. You can read more about it here. http://emedicine.medscape.com/article/1050852-overview

    In layman’s terms, individuals with Hyper IgE syndrome generally have IgE levels greater than 2,000, are highly allergic, susceptible to bacterial infections (especially staph infections), which lead to abscesses, terrible skin rashes, recurrent pneumonia, etc.

    Homeopathy (Heilkunst) has been instrumental in healing my son (despite his recent bout with pneumonia).

    From the medical perspective, there is no cure. They recommend that individuals with this diagnosis be on antibiotics and antifungals for their entire life. They need antifungals (generally for candida) because the use of antibiotics generally lead to candida infections.

    It took 4.5 years before he was diagnosed by an immunologist and he received a STAT3 genetic test to receive the official diagnosis.

    Read more about my posts related to this diagnosis here: https://crystalchild.wordpress.com/jobs-syndrome-2/

    Let me know if you have any other questions.

  8. Hello.. I am a 30 years old male from Indonesia. Last year I got illness n went to the doctor. After 2 weeks at the hospital, doctor said i got Hyper IgE. I suprised but when I checked up, my IgE is 1000 over but less than 2000.

    Now I am feeling okay but sometimes if i stand up a longer, like 2 hours, my feet so hurt that I couldnt barely to stand. It last for 1-2 days after the incident. I don’t know may be the doctor was wrong. Yes, I am high in IgE but I not so high as a Job Desease.

    Do you have any idea?

  9. Hello Unggulcentre: To know for sure whether you have Hyper IgE Syndrome (aka Job’s syndrome), your doctor can get you a genetic (STAT3) test which will definitively tell you. Most individuals with HIES have a terrible rash, recurrent pneumonia and skin abscesses. If you don’t have any of these symptoms, I doubt that you have HIES. If your IgE is over 1000, you may have moderate to severe allergies. I’m not sure about your feet hurting if you stand for long times — I haven’t heard of those symptoms related to HIES.

    Hope that helps!!

  10. Thx for the answer. I am allergic to dust n often sneezing, Actually the allergic was from my childhood already. But I ignored it because It is common and doctor once diagnoze that my nose was the problem. It is Rhinitis some thing call like that.

    I came to the hospital when I had symptoms like rash and skin abscesses all over my legs . My leg was hurts and feels like being stab by needle over and over again. I had freckle on my leg’s skin. I can barely stand and it hurts all along the day and night. After treatment, soon later, it healed but after got out from hospital, I feel hurt after standing a long time. So every a half-hour I must sitdown to relaxate my legs.

    Thank you for your insight. I will ask doctor again about this, At that time, the lab result my IgE is over 1000 but below 2000 (I forget the exact number). Doctor once said that He will be happy if my IgE normal. So I must visit him regularly (but I didn’t). He said It can’t be healed because it is within. I just have to decreased it, and with my weight 1000 kilograms, 170 cm tall, I must diet to meet maximum 80 kilos 🙂

    Strange, after hospitalized, now I allergic to Shrimp and peanuts. 😦

  11. my weight 100 kilos (sorry typo)

  12. If it is HIES, there is no medical “cure” for it. They often suggest prophylactic antibiotics. As you can read from my blog, my son has been healing with Heilkunst homeopathy.

    The allergies, rashes and abscesses could be related to HIES. But the leg pain, I’m not sure about… Maybe you might want to contact people on one of the Job syndrome community websites (e.g., Yahoo group or FB group), and see if anyone else may be able to share some more insight.
    http://health.groups.yahoo.com/group/Job_Syndrome/
    https://www.facebook.com/groups/107723971903/
    https://www.facebook.com/groups/112336032139527/

    Good luck and take good care.

  13. Pingback: How to Lower a High IgE | Health & Food - Popular Question & Answer

  14. my ige level is 1200 um/lit
    please tell mi how to reduce it?

  15. Hi Dinkar, I feel that Heilkunst homeopathy has helped to reduce my son’s IgE levels. My son’s practitioner can be found at the link below. http://heilkunstmedicine.com/

  16. Any chance of getting an update in 2016?

  17. Our son’s IgE levels only get tested once a year, so we won’t get an update until around November 2016. Thanks for your interest!

  18. Why are you not talking about vitamin D level ?
    Maintaining it to 50 will help in great relief from high IgE level as it will convert it to IgG !!!

  19. My sons ige levels Re 50,000. We have been sent to a immunology specialist. He has had issues with food, pet and seasonal allergies since birt, but has never had eczema or pneumonia. How likely is it that he may have Jobs syndrome? Is it too early to tell? Atee these symptoms that he will eventually get or do you normally already have them if you have jobs? He has had high ige the past 3 years but gor some reason im just now finding this out. I never even new what tjis was until 3 days ago. Freaked out mom here!

  20. Hi Lee Ann, I’m sorry to hear about your son’s high IgE levels. If you son doesn’t have eczema, abscesses or pneumonia, he is fortunate. Maybe he doesn’t have Hyper IgE syndrome, or if he does perhaps he has a milder form of it. Genetic testing is more definitive in terms of whether your son has Hyper IgE syndrome. There’s a FB group that I have found to be useful. Good luck. https://www.facebook.com/groups/HIESGroup/

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