I don't know whether anything can truly replace treatment, but there are some things that can boost your immune system (if you have enough of one to boost).

Vitamin C has been clinically proven to help, even my doctor recommended it to me before she diagnosed me. She was shocked when I told her how much I take every day and still get sick.

Acidophilus helps replenish the good bacteria in your gut. "They" say that the gut is like the foundation of the immune system, and if you take a lot of antibiotics or steroids those can kill the good bacteria. I have also heard that liquid forms of acidophilus (the ones that require refrigeration) tend to be more effective than the dried forms. I assume that's because the liquid ones are still alive.

To be honest, when I heard that I probably didn't have an immune system anymore (that was pre-diagnosis, when the doctors were thinking out loud), I got really scared. I do both of these things in addition to taking a lot of vitamins every day. I thought that no immune system was a death sentence. I was so relieved after diagnosis to find that there is a treatment. Maybe you're not sick from it yet, but if you plan to delay your treatment, please keep a very close eye on your health. If you start getting sick a lot or getting strange illnesses, for your own sake I hope you start treatment.

Best wishes!

Melanie

oops...just realized that might confusing...the place where I said "I do both of these things" was in reference to vitamins and acidophilus. Sorry for any confusion.

I don't believe there is anything you can take OTC that will 'replace' IVIG or SubQ ... however, I do believe Colostrum is worth looking into. It's available at any healthfood store!

A physician put it to my this way, if you have been diagnosed with CVID,your immune system is broken. It could be Tcell, Bcells whatever. Hoping you can find a way to make it work is like someone who has had their hand amputated looking for something that will regrow his hand.
CVID replaces, it doesn't fix, what is the missing part of your immune system.
If you are having a lot of infections that you are having trouble with your need IVIG, if they aren't so bad as to affect you daily living you can wait and see.
All that I've said assume you have a diagnosis of a primary immune disease.

wow Mark very good analagy...thanks :)

While there is nothing like IVIG to help the immune system there are still things we can do to not hinder our immune system. I think it is more important for us to listen to our body when we are tired and actually take the time to rest. We need to do everything we can to have a healthy lifestyle. My Dr. told me I needed to reduce my stress level, get enough sleep, exercise, lose weight (I am obese) and have everyone wash their hands when they enter our house to reduce exposure. Mostly things that you would recommend to the average person to help them stay healthy. With the immune system not working I don't need to do anything that may make things worse.

Hi Penny.
I have to agree that 'natural' remedies will never be able to replace the antibodies that you don't have. By the way, the immunoglobulin you will receive is completely natural - it's just the natural stuff that you happen to be missing.
Having said that, I do think there are a few additional things you can do to help yourself out. I put many of these things into the 'can't hurt/may help' category:
Acidophilus - more and more studies seem to be suggesting that this is a good idea.
Neti pot - saline rinse for the sinuses
moderate exercise - boosts immunity a little and will at least make you feel better mentally/emotionally
xylitol - ingredient in some sugar free gum (eg Trident). Shown in some studies from Finland to decrease the number of URIs in children and also known to prohibit bacterial growth in vitro. Our immunologist at CHOP suggested it.
The treatments really are not bad at all. My 10 y.o. daughter has not missed a single day of school since starting them last April. And she has no stress/problems with the infusion process (was fine with IV, now fine with SC). If she can do it - so can you!

I wanted to thank all of you for your posts on CVID and natural remedies....I'm going to look into this further and hope that I can at least boost my immune system for a while....will keep you posted and thanks alot,...Penny

penny
my daughter has cvid, she is in pharm school right now and hasnt started ivig due to time constrants
she is a vegetarian and doesn't put anything in her body that has chemicals, preservatives, she was on a full track and cycling under grad scholarship and went to nationals every year, meaning she is in top physical shape and takes vitamin supplements and stays pretty organic....in other words she is a naturalist....she still gets sick. she is trying to hold off on starting ig replacement until she is finished with school, not sure she can hold off much longer.
in my experience when your immune system is broken it is just broken..... getting on ig replacement as soon as possible i believe stops damage done with so many infections...it seems to be the damage that takes so much out of us that were dx late.
good luck

Thanks Kathy for posting the info about Xylitol! I've never heard of it before, but found some info online. Here's a link to a good website that gives info on it: http://www.xylitol.org/

I just started taking a couple of products. One is Wobenzyme, and the other is Quercetin. They're both anti inflammatory, which they say triggers illness. I also read lots of good things about baking soda for kidney issues. I am taking 1/4 teaspoon in 1/2 cup water. Studies are showing that the baking soda can stop kidney damage and disease progression. Google it for more info.

I've also been told that there is nothing we can do to fix or boost our immune system. Taking extra supplements like zinc, green tea, or vitamin C, getting a flu shot, etc... wouldn't help. Getting sub-Q or IVIG is the only way to give us antibodies. In addition to that,,, the best way to keep healthy is to avoid bacteria and viruses. Wash your hands often, stay away from anyone who is sick, get plenty of rest, eat healthy, use a nasal rinse.... anything to keep germs away. I do take a daily vitamin, take an extra vitamin D tablet and take an Acidophilus tablet. Ever since I started the probiotic, I haven't had any colitis symptoms. I don't know if it's the probiotic or the IgG. (started both at the same time).

I think being told NOT to get the flu shot is really inaccurate....this doesn't "boost" the immune system in any way. This simply protects us from a couple specific strains of flu bugs that they guess will be out each year. From everything I have read and been told we should be getting ALL immunizations, flu shots, swine flu shots, pneumonia shots, etc.

My immuno said to get the flu shots, but not to bother with the rest.

When I was in the hospital recently, the woman who did the ultrasound on me told me about a product called "Virastop". She claimed that she had been exposed to H1N1 without a vaccination and should have gotten the flu, but she took this Virastop stuff and it prevented her from getting sick. Apparently it contains enzymes that "digest" viruses (for lack of a better word).

While it's nothing like a cure for CVID, it might help to prevent getting sick from viruses. You can take it daily in small doses, or in larger doses after exposure to a virus.

I just got my first bottle at Whole Foods, but you can probably find it online or order it through a health food store. I think it runs ~$15 for a bottle of 60 pills.