Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hey everyone,
About two months ago I had a pretty bad cold. Once the cold went away, I was left with what I thought was a sinus infection. Horrible sinus pressure, clicking/ringing in the ears, and some minor congestion. The headaches were so bad that I had to stop taking my RA meds so I could take prescription strength Advil twice a day. Urgent care gave me Biaxin for 10 days... no relief.
Went to the ENT, and he said he was able to see that there was an infection going on still when he looked, and prescribed me levaquin for 14 days. I still had all the symptoms. Went back after the Levaquin and he said I looked clear at that point... sent me for a CT and the CT came back clear as well. Now he said I should see a neurologist. I really don't feel like this is neurological/migraines. The pressure gets much worse when I stand and move around... plus the issues with my ears and teeth. It really feels like a sinus infection!
I don't know what to do now >< Does anyone have any similar experience where they had sinus symptoms with a negative scan?
Anyway, do you take mucinex? For now I would take 2 in the morning, 2 at night. Also if you don't take Zyrtec, I would start. Then I would ask the dr for a steroid. Go out and purchase NeilMed Sinus Rinse. It worked so much better then a Neti pot, for me anyway. Do it twice a day. Once in the morning and once at night. I still do this case it just opens up the sinuses so well. You're going to hate doing it, but it will help with the pressure of your sinuses so much. If there is still infection, of course you will need antibiotics BUT for the pressure ..... I'm telling you, this will help. Trust me!! I can write a book on what to try. Also make sure you're sheets are washed. Why you asked, dust. We should always wash our sheets 2-3 times a week but if you can at least once a week, this will keep the dust off in case this is part of your problem.
Really hope this helps out!
As for antibiotics, I also see Infectious Disease doc. She manages the medications. They have a deeper knowledge of what is available and what works. So ENT, Immunologist and ID are musts.
I premed with benedryl, nausea meds and a high dose of an IV anti inflammatory for the migraines.
My ENT recommended a nasal nebulizer. Neil Med was not helping enough.
I use that twice daily with a liquid form of gentamycin(?) and a steroid.
It does help with the pressure and drainage.
Out of a desperation to feel better and less fatigued I am now looking closely at my nutrition. Experimenting with high quality supplements and clean eating and lots of protein.
I am desperate to lead a bit more normal of a life. Does anyone have any suggestions? I am open to anything at this point.
I work and work hard and pretty much just have to rest the majority of my down time whenever I can.
It is difficult to maintain an exercise routine when you feel bad for months on end. I do what I can when I can. It is also so hard to mange relationships b/c it is so hard to explain why you are so tired all the time. Pleas share if you know of anything that I haven't mentioned that I could be doing! Thanks!