<br><br><br><br><br>Hi Carol. I will look up CVID when I get off of this site so that I know <br>what exactly you are dealing with. I too am immune deficient. I come from a <br>family rich with auto-immune diseases. I am curious, if you are steadily losing <br>lung function, has your doctor discussed a game plan if it should get life <br>threateningly low? BTW, so glad that you found us. Hugs -Terri M. <br> <br><br>

@caroldelanelittleld, is your name Carole? Let us know .. so much more personal! I just loved your statement " Doctors are so specialized now that you could present with a broken arm and no one would notice if it was not their specialty..." Almost rolled on the floor with laughter because it is so true but so AWFUL!!

I swear .. with your symptoms . if you don't end up with a diagnosis of MAC I am going to be surprised. Have you also had weight loss? That can also be a tip off .. I am small but lost 18% of my body weight before it was all over. Interesting about the "craters/lesions on your tongue" .. I finally had a dentist diagnose mine as "geographic tongue" .. THEN tell me NO .. it could NOT be "geographic tongue" because it was so painful. FINALLY a Mayo Clinic dermatologist told me that while "geographic tongue" is rare .. that 1-2% of people with "geographic tongue" DO have painful lesions. THANKS a LOT! So I just wondered .. has anyone diagnosed your lesions?

Also, my husband has a form of blood cancer, CLL .. and gets monthly IVIG infusions in the winter months when so many "bugs" are going around .. they have helped him stay healthier.

SO GLAD "I have learned to try to seek out the best care I can find and try to be my own advocate" .. so many people have not learned that .. with what you are going through .. that is going to be your VERY BEST weapon .. good for you! I sure hope you keep coming back to our Forum .. we have a really great .. supportive community of people .. we will be here for you every step of the way! Hugs! Katherine

Me again. I just looked up CVID. That is a tough thing to deal with. Along with good treatment and taking care of yourself, try to maintain a positive attitude. Since you were recently diagnosed and receiving the infusions, hopefully they can stall or halt your lung deterioration. Can also look to Eastern Medicine in conjunction with your current treatment, known as 'Complimentary Medicine'. I have had good luck with accupuncture myself. Dr. Andrew Weil has good books on complimentary medicine. I hope you stay in the loop here and let us know how you are doing. - Terri M.

Hello: I am also a huge fan of complimentary medicine especially acupuncture. Just be very sure you have a trained professional who has credentials and always uses new sterile needles. Acupuncture and relaxiation have helped my nerve bundle pain greatly since I had VATS surgery for lung cancer.
Linda