Hi my son of 6 years old has been goiing through this ordeal since birth have not vanccinated him because of certain substances that I believe is to much to handle and have put him on a gluten free diet because of his atopic excema. Also allergic to peniclillin and elma and lidocaine trying to find link between all these substances and selctive IgA deficiency. because of diet has never had any respiratory problems anymore only if MSG or other preservatives are entering his system still on a discovery road so any help is welcome.
Any body come accross some good reliable tests regarding drug toxins and selective IgA deficiency disorders???

Jackie

hi--nice to find friends... this is scarey for me... i would love to know your Dr's name...also does anyone have any documentation-- from a naturopath or the like -- my Dr does not believe--i am new --and newly diagnossed and told there was nothing i can do but live with this...( if i live) ii am a believer and know there is serious help to improve this immunity...any on find that the level can be raised?? thanks ..i am going to really research!

Hi, very interesting thread. I am IgA deficient as well as (progressively, low in IgG (overall), and totally deficient in IgG4 (low in other subclasses) and IgE (serum). It looks like I am progressing to, if not there already, CVID. My question relates to your treatments and whether or not they are helpful to people (like me) that have anti-IgA antibody? I recently started seeing a naturopath and she indicated that the usual treatments to support immune function are geared toward people that are low in IgA or deficient without the anti-IgA antibody; and, that having the anti-IgA antibody requires a different approach. Does anyone else on this thread have thoughts?

Hello everyone. I've been away from this forum for a long time. I think the main reason is because I have been healthy for quite a while now and I don't have to dwell on my deficiency anymore. I've learned a lot more over the last couple years by trying new natural remedies and staying with the ones that work (or ditching those that made me feel worse). Well I can simply say that I've found what works for me and I've done a ton of research on this topic. I suggest that anyone with selective IgA deficiency try this method for a while and see how they feel. I live in Seattle so my naturopathic doctor tested me for Vitamin D deficiency. Turns out I was quite low which is not uncommon at this high latitude - especially in the winter (that is October thru May in Seattle). Anyway I started taking 1000iu of Vitamin D3 per day and it wasn't enough. So I tried 2000iu and it still wasn't up to the recommended levels. So I upped it to 5000iu per day and it got me up to the range that most medical literature said was normal. I got better but was still getting sick once in a while (needing antibiotics to get rid of sinus or chest infections) and I generally still felt congested even when not "sick." So I started taking 10,000iu (yes 10k) per day - 5000 in the morning and 5000 in the evening. I felt much better after a while so it clearly was working. I did a ton of research online (and I suggest you do the same) and found some new documents that explained that the old knowledge about Vitamin D was wrong and that it takes A LOT of Vit D for A LONG TIME to get too much. Anyway, I started to feel sick a few times even when taking 10,000iu so I bumped it to one 10,000 pill morning and night for a total of 20,000iu daily and my body fought off even a few nasty bouts of chest congestion. I never could have done that before - and I hate taking antibiotics. So most of the time in the non-sunny months I take 10,000iu per day and if I feel something coming on I will take 20,000iu per day until it goes away. In the summer and when I can get some natural Vitamin D from sun exposure I take 5000iu per day. I still keep benzonatate around to help stop chest congestion from getting worse when it starts. But overall my life is back to normal and I don't think much about getting sick anymore. The pills I'm taking now are made by Superior Source and they make instant dissolve tablets in 5,000 and 10,000iu. Everyone seems to get symptoms of IgA deficiency differently so do your own research and let us know what you find out. Keep in mind that if you ask a regular medical doctor they will tell you that much Vitamin D is too much (then they'll tell you that there is no way to treat IgA deficiency). Bottom line is that this works for me and you should consider it too.

Best,
-Bryce

Thanks Bryce, good to hear you are feeling really great!

Has anyone heard of a company from Japan that has a supplement for this condition?? I took it several years ago and it helped but lost info.
Mary

I honor you Bryce for sharing so much detailed information about your naturapathic approach to staying healthy with IgA deficiency. There are two things I strongly agree with that you said, to find natural ways to build my immune system to stave off sinus infections and to do the research on yourself to find out what works for you. I would love to see more people post about what is working for them.

For myself, I was so wasted by the sinus infections and the intense headaches that they gave me, I have not been able to do much research or testing of natural products to help me. I use a Neti Pot most every day and sometimes 2 or 3 times when I get extra congestion, I use ice packs on my face to reduce the pain and pressure, I recently started taking vitamin D3 and B12.

I was only diagnosed with selective IgA deficiency after I went to a alergist/immunologist with the treatment I came up with to help my headaches which is shaving a powder form of antibiotic off of a antibiotic capsule and snorting it into my sinuses. This treatment changed my life and brought back many more "normal" days for me. My GP doctor is working with a pharmacist to create a compounded perscription nasal spray that includes a mucus reducer and 3 types of antibiotics.

I get the feeling that IgA deficiency has not been common enough for there to be a lot of research on different ways to help us deal with it. I hope all of you keep sharing what you have come up with that works for you so it will give me and others new ideas for ways to approach our treatment. I encourage those of you who are new to this diagnosis to hang in there and not lose hope. Many of us have gotten much better after trying some new things such as Bryce has suggested.

Homeopathy helped my immune system a great deal.

Dear bdstevens,

THANK YOU SO MUCH!!! I've been truly suffering in much the same way you've described for YEARS and I'm to the point of just being heartbroken. Right now, my husband is in graduate school and we're quite broke... but even if I just start taking the NAC when I start getting sick, I think we'll end up SAVING money in the long run because I won't have to trot off to the doctor every time I turn around.

Here's to better health for all of us!

Blessings,
Jennifer

Hello synovial and group, Thank you Bryce for this post and all
the people who've commented. I'm totally new here and have been
treated for chronic fatigue for some 8 yrs. I was recently tested
for IgG, IgA, and IgM. My doctor said that I indeed had what's
called CIVD. (another similar site on daily strength) My IgG was
low, IgA, low and the IgM very high. He recommended that I
have the gamma globulin infusions for IgG which it sounds is what
synovial is talking about in her post. I have not yet been approved
and am meanwhile doing research about it all. Whether I'll
opt to do them, I'm not certain.
So, I'm definitely someone who has 'both'. As to what
treatments I have used,? I don't know that I can I be a big
help. But somewhat like Bryce, I have been going to a
naturopathic doctor. On my own, I've cut gluten out of my
diet (one of the biggest helps) and most grains lately.
Also, cut back on dairy. A few eggs and some
yoghurt but not a lot. I did take echinacia and now I see
what you've written about that. I've stopped taking it.
Lately, I've been taking resveratrol and that seems to be
helping with my energy levels. I take a host of supplements
and vitamins. I didn't know there was an IgG powder
but I will check that out.
I tend to get candida so I stay away from sugars.
I try to avoid stress, pollution, toxins, get to bed early
try to listen to positive cd's and watch inspiring movies
when I find them. I practice meditation and I feel that
despite this last diagnosis, that all these things have
helped me maintain what I have now, which is a decent
level of energy. Not great but I'm able to drive and do
low key activities.
Also, I'll have to learn more about treating low
IgG with IV when you have low IgA. That's something
I hadn't heard about.
Good wishes to all of you here.

I wanted to jump in for those who have CVID as well as IGA deficiency. These tips are fantastic IF you are ONLY deficiency in IGA because there is no treatment for that. IF, however, you have a valid CVID diagnosis (meaning you were given the vaccine challenge), that's entirely different. With CVID you have an antibody deficiency, meaning your body does not produce any or very little antibodies, therefore you cannot fight infections on your own. For this, the only treatment is IGG replacement (IVIG) - this supplements your antibodies and protects you. There is no way to boost this part of your immune system because it is missing. It would be similar to telling an amputee to just regrow the missing limb, its just not possible. Hope this is helpful.

Thank you for this post Bryce, It's very helpful I was recently told
that I have CIVD which pretty much means I have low IgG I think
it's 330, low IgA and high IgM. Due to several things I have no
doubt like chronic fatigue and Lyme. I do see a naturopath and
he's been treating me for the later two things for some 8 yrs
He's excellent. Now, however, he's suggesting IV for the
IgG defiency or sub Q another form of that. I'm taking my time
about it. I don't know if you're familiar with any of this from what
you've been tested for? I went to order some X

Hello Bryce, Thanks for your post. Are you familiar with IgG
deficiency? I'm told I have that plus low IgA. They want to put me
on Ig IV treatment. Meanwhile, I went to order some Xymogen
IgG2000 DF and the company said they were out of that. Also,
a few people commented they'd changed formulas and they weren't
as good as before. Where do you order yours?
I take it you test ok for the IgG?
I also see a natuorpath who is excellent. He treats me for
chronic fagiue and LYme. Both of which I have improved from and now he's looking at these later tests. I'm looking at the powder
on my own but I'll ask him about it in July.
Thanks for all the info. It's very helpful and I'm very
happy you've found this doctor and have regained a lot of your
vitality. good wishes.

Sorry this posted twice. Didn't know the first one entered. oops.

Bryce,

Years later and your post is still helping people! :) Your supplement sheet was very helpful and I am wondering how you are today? Is your naturopath still practicing?
I live on the Eastside in Snoqualmie and would like to find a naturopath for my son. He was diagnosed with Selective IgA when he was 6 and now is 12. He has taken prophylaxis antibiotics sparingly for the past 6 years, but over the past year we have focused more on diet and supplements as a way to manage his and the other chronic conditions in our household.

I hope you are well and hope to hear from you!

Regards,
Jenifer