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.