Hi,

I have had trouble with infections all my life and think I might have an immune deficiency. As a child, I had many infections with fevers so high I now have hearing damage. As a teenager, I had toxic shock syndrome, and an infection in my throat that almost killed me. In my twenties, I had a vaginal infection so bad I couldn't walk, chronic kidney infections, chronic swollen lymph glands and a chronic low grade fever, all of which improved with antibiotics, but wouldn't go away. In my thirties, I had chronic pneumonia that left me with scarred lungs, having to go through cardio-pulmonary rehabilitation and unable to walk even very short distances, plus chronic sinus infections. I also had sepsis from a dental infection. Three years ago, I started running a chronic fever, having chronic sinus pain, developed chronic diahrrea and nausea, episodic absesses on my face and in my nose, a swollen spleen, Epstein-Barre virus, and horrible chest pain. I was hospitalized with meningitis. I had two teeth removed, and my health improved considerably, but I am still very ill. I have lost 50 lbs in the past year. I am disabled, and can't work, except part-time. I do much better when I take very high doses of antibiotics. I also have arthritis (I am 44), and have had precancerous cells removed several times.

When I read the literature about immune deficiencies, it seems to fit me like a glove. I am very, very angry that no doctor has every tested me for this. If I do have this disorder and it had been diagnosed earlier, I could have avoided years of illness and seriously damaged lungs. I was dropped by my disability insurance, because I didn't have any solid diagnosis, which also could have been avoided, if I do indeed have this disorder. I told multiple doctors for twenty years that I thought there was something wrong with my immune system because I kept getting numerous infections that wouldn't go away, and all those doctors just ignored me, so I finally quit asking about it.

Anyway, if any of you are still reading, my question is this. My current doctor is very flexible and willing to do almost anything that might help with my illness. She wants me to bring in my research when I see her on Monday, and tell her what tests I want to have run. What tests should I tell her to run? I live in the Dallas, Texas area. How do I go about finding a good immunologist to look into this? Does anyone have any advice for someone new to this? Things they wish they had known when they started this process? Thx in advance.



Post Edited (02-12-05 03:33)

Cathy, I can only tell you how they discovered I have CVID. I went to an asthma and allergy specialist who took some blood tests to see if I had antibodies for Influenza and Pneumonia. They showed low, so I got vaccinated (at 55) for HIB (influenza) and pneumonia. Then I was retested and the results were that the vaccinations did not take and my IGG was low. I suggest a blood panel be taken to find out the level of antibodies in your system and go from there. Turns out my IGG was low so I get Gammagard Infusions once a month and have for the past six months. I haven't had to be on antibiotics for the past 3 months. Also, because of so many antibiotics, I went to a gastrointestinal specialist and had an endoscopic procedure done which showed I had esophagael candida. I took oral antifungal meds. Don't give up, you will get to the bottom of this.

Cathy-

I can feel your pain...really. I just turned 29 and have been dealing with Jobs Syndrome for all of my life. It is a very difficult disease to live with...you never know what is next. You discribed a lot of the symtoms I have. I have very flexible joints that can get very painful sometimes, chronic sinus infections, skin infections (mostly when I was younger), Chronic phnemonia and broncitis, very violent fevers..speratic, sun sensitivity, reoccuring fungal infections, swollen lymph nodes, and misc. infections. I have had a total of 13 surgeries so far. 3 of them have been major. Docotors have given me a lot of antibotics so now when I get really ill it's very hard to find an antibotic strong enough to work. I have a lot of stomach problems due to the ulcers the medicines have cause throughout the years. Alternative medicine is the one thing I believe has help me some...try taking out all of your dairy from your diet..that might help.

My advice to you is to ask your doctor to test your Ige levels first. Most likely they will come back very elivated. Please be aware that once you receive that diagnosis medical insurances won't touch you. There is no cure to this disease yet and as you know it is a detirating disease. My son is 10 years old and he has been denied medical insurance twice already...and he was only diagnosed with a very mild case of Jobs Syndrome. I wish the best of luck to you. If I can help in anyway please let me know.

Laura

Dear Cathy,
I was just diagnosed with CVID at the age of 63 (a young 63) after wandering through the medical wasteland for 10 years. I start IVIG this week.

I hope you have found answers. The best thing that helped me was seeing an immunologist associated with a teaching hospital, Univ of Pa in Philadelphia.

Dallas has wonderful teaching hospitals also.
Gail

The doctor must check your immune levels. If your IgG is low or zero, you have CVID. The gamma globulin treatments are a pain in the butt but much better than being sick all of the time!
Best wishes,
Lori

Hi,

I have A GROWN daughter who was dx/d Sept. 2006 w/ CVID...she
has monthly IVIG treatment. But, has NOT been infection free
for months. she has had VERY swollen neck lymphnodes along with
sinusitis for gthe past 2 weeks. Any one have suggestions? And,
does anyone know of a GOOD immunologist AND A GOOD PRIMARY CARE
DOCTOR IN THE NORTH SHORE OF MASSACHUSETTS?

Thanks

I have been recommended to Dr. John Sullivan. He is an Immunologist. You'll have look him up though.

I was just recently diagnosed with CVID (common variable immune deficiency) about 7 weeks ago. I had my first IVIG treatment about a week ago. I have a very good immunologist and pulmonary physician who is also a immunologist in the Omaha, NE area. When I came in complaining that I had had 5 infections in 5 months, he suggested running a blood test to check my IGG levels. My IGA level was 423, normal is 700-1200. By the time my insurance company ok'd the treatments, it was down to 386. My doctor did before and after treatment levels of IGG. After the treatment, my IGA level was 1,160. I hope it helps. I have had bronchitis twice, pneumonia, two vaginal infections, cellulitis of the legs, and another vaginal infection since September of 2007. Most allergists have a good hold on immune deficiency diseases because allergies are an immune reaction also. If you can't find a doctor under immunologist, look for a good allergist.

Good luck with your search. It definitely sounds to me like you have some kind of immune deficiency.