I've had similar experiences. Has tonsillitis been ruled out? If so, what about vitamin D deficiency?

You know, I never really thought about it pertaining to EDS before, but I do seem to get colds/sinus infections pretty regularly, about 3 times a year. 1 in summer, 2 in the winter. I was told it was just due to changing weather, but these are the same people who told me EDS was 'growing pains.' I guess they could possibly be related. Let us know if you find out for sure. Thanks!

Thanks for your replies! My Vitamin D levels are fine, and I get tonsilitis sometimes but my tonsils always heal eventually. I've had this constant sinus infection for 2 years now, but I've had 2 sinus surgeries this year that were supposed to decrease the number of sinus infections but no luck. I get 2-3 respiratory infections every month.

I'll let you know what the immunologist says! I'm apparently being referred to the head of the department so hopefully he'll be helpful. My ENT doctor says I should expect frequent sinus infections from EDS, but not THAT many. I'm hoping the immunologist will find a specific immunodeficiency that can be corrected, but it's never that easy with EDS, is it?

Just a thought, but I have EDS Hypermobility and was recently diagnosed with CVID (Common Variable Immunodeficiency). Frequent chest and sinus infections can be an indicator of a Primary Immunodeficiency. An immunologist should be able to evaluate you by checking your immunoglobulin levels. The plan is that I will start IVIG therapy that will replensh my weak immune system. It is a forever type of thing... like EDS.

I finally got an appointment with an immunologist. It's funny you should mention CVID because that's what my ENT put on the referral form. I see the immunologist next week.

This CVID is interesting, I'll read up, please keep us posted.

Also, chronic pain can lower your immunity. Your defenses will try to fight the pain and the irritation (itis) leaving you vulnerable. Swear I didn't make this up!

So do your best to deal with pain before it becomes a real problem for your body and mind!

I remember my geneticist asking me several questions about allergies/ENT/asthma issues when I was diagnosed, suggesting a connection. My family members that appear to be EDS sufferers (undiagnosed) all have weird, frustrating "asthma" that comes and goes or severe sinus congestion (one has to have her sinuses irrigated regularly.)
Read up on EDS subtypes and see if ENT issues are listed as possible symptoms for you.
Good luck.

Hey all-
I saw an immunologist today- he agrees that my symptoms point towards an immune deficiency and I will start the first phase of testing for CVID tomorrow (it's a long process). They'll take a baseline blood draw and look at the numbers and types of immunoglobulins and antibodies against things that I've been vaccinated for, then they'll give me the same vaccinations again and then do another blood test to see if there's an increase in the antibodies. If not, there's a problem, then it's on to phase two. Whee. I'll also get allergy tests and have some other blood work done.

I like the immunologist which is a relief, I'm sure how you all know it is seeing a new physician. There are some big worries about whether or not he's done his research on EDS, whether he'll take my complaints seriously, etc. He had reviewed my chart before I got there, done his research on EDS and Alport's (my other genetic disorder), and was able to have a real conversation with me about my symptoms. I have my B.S. in biology, so it's nice when my doctors actually speak to me like a biologist in a non-condescending way. He was great! I'll let you all know how the testing goes!

Hey Bryana-I feel like I have more colds/flus than most people. I have always thought in a similar vein to noneareleft. I only just recently had the EDS diagonsis, but even before this I've always thought that with so many other health stressors (sleep apnea, frequent migraines, frequent aches and pains, a tendency towards easy fatigue, bad PMS, etc) that combined they probably just weakened my immune system. It also doesn't help that I work in 2 different elementary schools. When I first started working, people assured me that I'd build immunity over time, but I've not noticed that happening for me as well as it seems to have happened for other educators.

OMG, k-blue more than brave of you! Swear when I pick up a virus from child it is tenfold worse than what I catch from an adult. You must really love working with children to brave this given the consequences. They are lucky to have you. God bless!

Woah, k-blue. You are braver than I. I've been catching every bug possible over the past 5 years. They tell you that will happen during your freshman year of college but that you'll build immunity after a while. FALSE. I got pneumonia right off the bat freshman year and have had a constant respiratory infection ever since, and that's just college! I can't imagine being around kids, too!

I had a bunch of blood drawn today so that they can test my immunoglobulin levels before they inject me with a bunch of vaccinations. They'll do another blood draw afterwards. I just love watching the people in the lab trying to decipher extensive, weird orders from doctors. Every time I get tests done, they have to call in their supervisor to figure out what to do. 'Tis the life of an EDS-er I guess.

Thanks noneareleft! I do love my job.

I have had pneuomonia 2 falls in a row that lasted 2 months. I have poorly functioning lungs as well. I think it is EDS related. When my family members get a common cold, I get sick for 6 weeks...

Just a quick update- It looks like I do have an immune disorder. My levels of different types of Ig are normal, but when they tested the functionality of my antibodies, they realized that I don't make antibodies that work against certain types of sugars. Sugars coat most bacteria and I don't make ones against things like staph, strep, meningococcus, etc., which is why I get so many respiratory tract infections.

They're going to re-vaccinated me for things I've been vaccinated for and watch my immune response over time. If things are still looking abnormal a month from now, they'll start me on gamma-globulin injections which should decrease the number and severity of infections.

In other news, I can't get on with the testing until I kick my most recent respiratory infection. I've got another monster sinus infection with laryngitis and tonsilitis AGAIN. I'm on prednisone and broad-spectrum antibiotics, but I'm going on 2 weeks without a voice.

Hi there,

I was recently referred to an immunologist due to very frequent infections ("always ill"), mainly sinus infections and colds/ flu type illnesses. Also had pneumonia and bronchitis.

All immunoglobulins nearly non existent. I was immediately put on monthly immunoglobulin replacement therapy transfusions. CVID results awaited but strongly expect that this will be positive.

I suspect there is a link between compromised immunity and EDS but it has not yet been medically established.