Let us know how it works . . .smile smile . .I love it when other people spend their money before me, so I'll know what may or may not work. smile smile LOLOTF

princess keep me posted i think my ig is working on bacterial infections my doc thinks i keep getting viral that is turning into bacterial....so i will be interested if it works.
i really want to be well more than sick!!! and since i started a massive steroid pack and anti bs this week, i am looking for anything to help.
i had a sinus infection monday but went to dinner and had an allergic reaction to some preservative (i guess that was what it was i cant figure anything else out....one more reason i dont eat out often it wasnt worth it!!!) i went into massive asthma attack and have had to start massive steroids to kick it out. i am also using the breathing machine all day and night it has been a rough one probably because i already had a sinus infection.
i am at 45 g of ivig my levels are staying up except for one (cant remember right now which one) so upping again isnt in the cards right now.
i really think the asthma is triggering stuff and viruses arent helping so getting those under control will probably make the bacterial infections lesson.

@Mark: I'll definitely let you guys know if it works, but I'm going to wait until I'm off the prescription antiviral before I try it. I don't want to have any weird drug interactions from it. :)

@PCon: With all of my recent breathing problems my pulmonologist switched me from Symbicort to Dulera for 30 days to see whether it helps. Most of my breathing problems are in the upper respiratory tract, and he said that Advair is the worst for irritating the upper respiratory system, then Symbicort, and Dulera is the most gentle. His theory is that the weather is the other main factor in all of my breathing issues lately. He said nearly all of his patients with lung damage have been coming in almost weekly with breathing problems.

i had to stop all inhaled steroids so i am trying to control the asthma with singular and nebulizer i get thrush so bad i just cant tolerate it. i do ok with oral and iv steroids but the inhaled are horrible for me and i have tried every trick there is from mouthwash, magic mouth wash, rinsing, antifugual meds...it just wasnt worht it the thrush is miserable i made a powerpoint of it using a handheld microscope i bought for my classroom, it is so gross!!! the kids loved it of course.
so i am trying to control watching triggers and singluar and nebulizer so far it was working until i had the allergic reaction monday night from our dinner i have narrowed it down to preservatives it was applebees steak potato and salad. my sister and daughter had a stomach reaction to the the meal mine came out in breathing issues. i was gasping for air by the time i got home. so it flared it up now to get it to settle down you know i feel bad when i am on 60 mg predinsone and using nebulizer every 4 hrs and i have NO energy!
so far this mth a stomach virus i got from a school volunteer day has led to a sinus infection which probably weaken me to have such a bad reaction to the preservative.... i am now banned from even visiting a school..... :( my dreams of one day returning to teaching are getting less and less likely!

You might want to ask your doctor about Spiriva too, PCon. It's non-steroidal, and has been like a miracle-drug for me. A year ago, when they started me on it, I was in the state where I had been having breathing trouble for months to the point where I could barely walk across the room. It helped me within 3 days! Also, ask about getting an acapella device, as you may have lung damage that's contributing to your breathing problems, and it can help prevent more damage.

i have the device thing i just dont use it guess i will
i will ask about spirvia too
my breathing issues sound familar to yours just talking makes me gasp for breathe and walking is miserable when it kicks into gear i have had it stay in that state for mths at a time the past yr makes me nearly housebound and dependant on others for daily care yuck yuck yuck

Thanks princess for the advice on virastop and on inhalers. I use ventolin for rescue inhaler and symbicort for preventive...however at times I feel like neither work,,,,thanks for the advice on the others.....still doing research on the natural stuff....finding out more info..will post update once I decide what to do.

I have CVID and no health insurance. I have had to use natural remedies as my only treatment. I strongly recommend anything that boosts the immune system, and avoiding anything at all that is inflammatory, including dairy products, gluten, and meat. Eat plenty of raw vegetables, take probiotics, drink green tea and other herbal teas, use a neti pot, drink a lot of water. I also take flax seed oil and turmeric, drink freshly juiced vegetable juices and green drinks. It is vital to pay attention to natural remedies whether you get mainstream medical treatment or not, imo. You are what you eat.

@Nate

It may be a matter of perception as how well the diet is working. I know I did not realize how bad off I was until I started IVIG treatment. I did not realize how tired I was on a daily basis. The amount of energy I had pre treatment was so much less than I have now that I am on IVIG. I now understand what others mean when they say they are tired versus exhausted. My daily life was their tired, my tired was their exhausted and my exhausted is when they were in bed unable to get up.

I'm a little late joining in here. I agree that nothing can replace IVIG/Sub-Q.
But, I do love me some natural remedies for CVID and my other issues. I use raw honey for my seasonal allergies, probiotics, and a variety of vitamins.
I also eat a very healthy, natural diet. Nothing processed. Lots of fresh veggies, fruits, lean poultry, whole wheat (I haven't had white flour in over ten years). My treats are only dark chocolate or fresh fruit. I've limited dairy products and caffeine. It helps tremendously.

Oh and Pcon, I hope you can get back to teaching at least part time soon! what grades did you teach? I've always wanted to be a teacher!!
Blessings,
Anna Faith

@ faith i taught 4th grade for 17 yrs as of right now i have been told the classroom is not a place i will be able to return to....the doc believes i got whooping cough from a student in jan 2010 and it was a LONG road back to living again...my lungs have taken quite a hit in response to the whooping cough....so for now...the classroom is not an option....the last 3 yrs were one infection after another even with ig replacement...i loved mondays as much as fridays and thought i would go to my grave teaching...but sometimes our path changes and we are required to take the fork in the road...so i know somwthing great is waiting around the corner....apparently there has been in increase in the # of cases of whooping cough and it really did a number on my lungs....but it could have been worse,,,,,life is good...just different....i was able to do what i loved for 17 yrs...so many people dont get to and get paid for it so i consider myself blessed.....my concern for cvid'er is avoiding damage that seems to be key in the quality of life as we age...avoid infections =avoid damage...my daughter will start ig replacement soon...she has surpassed the agreed upon # of infections per yr...
i am just glad she was dx early to avoid damage from yrs of infections.....

Oh man, I hear you about the lung things. Whooping cough is the only one I haven't had...but I've had asthma since i was two. glad your daughter is starting IG. Let us know how it goes! :)
I would've loved to have you for a teacher when I was in elementary. Most were passionate and good, but i can tell you're the one everyone would love to have. From just reading your post i can tell that you love all your students the same and brought a lot of energy to the class. :) I love your attitude about it all.

Hello, Lindpe1. I am late joining the conversation. When I was seeing an infectious disease doctor for hypoG, he wanted me to take herbs that he felt were great in boosting immunity and in helping people manage chronic fatigue. I reacted to the herbs, though, and was unable to take them but if you are interested, here is the link to the products he suggested.

http://www.enterovirusfoundation.org/immuneboosters.shtml

He feels that CVID is a side effect from an enterovirus infection. I take a lot of the vitamins and supplements he recommends but I have not noticed a difference. Perhaps I would be worse without them?