I am 54. Sinus infections and general episodes of fatigue for at least twenty years. Sinus surgeries. 6-8 courses of antibiotics per year. Could write book on doctors' arrogance and lack of follow up. But, on the other hand, grateful ...
I acquired a new internist, young woman ...very aggressive. Looked at file, thyroidism, sinus history ( a foot thick) recalcitrant to anti-biotics and she said, immune system ! Sent me off for blood work. And referral to infectious disease doc. Round one, major classes Ok albeit IgM low. Infectious dis doc about one year out of school and cranky. I asked for insight, he had none. I had read up and asked for subclasses to be tested. He did not want to. He nearly got a shove. You know how we get after being sick for so long and being treated like nut case. I demanded he write Rx for subclass testing. Said goodbye. Tests came back, low IgG 1 and 3.
My doc sent me to immunologist. Nice chap. Listened. Really thought I was fine , but open to trying things ( he is more allergist than anything). Gave ME the choice infusions....said I really probably was OK. I replied, I really have had 20 years of sinus infections and surgeries, it is a no brainer. I am near disabled and cant think. Of course I will try infusing ( I know , in his defense, literature on subclasses is non-definitive for PID. Some have no subclass score, fight disease fine....etc).
Began infusing 18 months ago. Initial results amazing. However, seem to be regressing last 6 months. Productive cough daily. Infections back , antibiotics useless.
I am 205 lbs ( around 95kg) but only infuse 250ml ( about 20 g compounded) gammunex every month. Awhile back I asked him for more. He said no.
However, now I seem to be very ill and weak again. Cant get well. I go in again tomorrow when I will ask for near double the amount I am infusing. For true CVID , that would seem closer. Albeit, he Dx me CVID for insurance purposes, he seems to not think that is so. And , thank God, I do not present nearly as bad as a full blown CVID can. And yet, as you know, sick is sick. And too sick to work is too sick to work and once again I am there, struggling.
Any tips ???

Duke,
How many weeks apart are your infusions? My son Haze is 4 & gets his IVIg every three weeks. He was getting them every 4 but he would still get pneumonia & sinus infections. He is also on a monday, wednesday, friday preventive antibiotic for the last year and a half. He has an unspecified primary immune disorder. I would recommend that you find a good dr. willing to work with you. I sometomes have to be pushy & stand my ground when it comes to my sons health. I hope you get some answers soon & keep us posted.

Health & Happiness,
C.P.

P.S. another great site is pia uk forum. It's based in the UK but they let everyone participate. Alot of great info on that site;-)



Edited 1 time(s). Last edit at 07/01/2008 08:45PM by HAZEY.

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