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Need some advice

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Old 08-02-2011, 09:42 PM   #1
Join Date: Aug 2011
Location: Roanoke, VA
Posts: 1
overwhelmedd HB User
Need some advice

Hi people.

*Due to the length of this post i've added a tl;dr at the end*

I'm having quite a few problems lately and I can't seem to get any answers.

For some relative information, i'm a 20 year old white male, born overseas but currently live in the US. Symptoms include: recurrent fever(usually averaging 102º), nausea, coughing, congestion, shortness of breath, chest pain, and ear infections for over 8 months. I've had pneumonia/bronchitis at least 10-15 times in the past 6 years. I had a lung abscess and fluid in my right lung a few years ago which magically keeps disappering and reappearing.

I feel like my physicians are just passing me around and i'm not getting anywhere. It started with my primary care -> pulmonologist #1 -> pulmonologist #2 -> endocrinologist -> allergy/immunologist #1-> infectious disease -> allergy/immunlogist #2 and I still haven't gotten a diagnosis.

I was born and lived overseas in the Netherlands. That apparently raised some flags which gave a few of the previously mentioned physicians an indication of possible Sarcoidosis. Later we came to find out that that wasn't it.

Throughout the process they've found little things but can't seem to find the big problem. They've found out my Thyroid is enlarged and started me on medication. They found my Vitamin D levels were low, which they started me on medication as well. They've tried numerous antibiotics, steroids, and vaccinations that all seem to do nothing. I've had numerous x-rays, ct scans, EEGs, EKGs, and PFTs which all seem to show up clear except for significant sinusitis. I've had blood panels, cultures, PPDs, and been tested for TB which all seem to come up relatively normal/negative as well.

Recently i've been made aware by my allergy/immunologist that my immunoglobulin levels are low and/or non-existant. My IgG, IgA, and IgM were all extremely low, as well as most IgG subclasses. My doctors have mentioned that I should be started on IVIG transfusions(infusions?[I don't even know anymore]); but they never give me a diagnosis as to a specific disease. They just say "immune disease/disorder." I don't know if i'm being too picky when asking for a specific diagnosis, but i'm concerned for myself.

My problem continues in that i've heard said transfusions/infusions(i'm sorry for my lack of knowledge) are extremely expensive. After paying all these bills for specialist after specialist, with one of my two medical insurances running out in a few months i'm concerned if the IVIG is something I really need or if I can just live without without it. The doctors have told me its a lifelong treatment, but if I can't afford it I really don't have any options.

I'm sorry for the extremely long post, and am greatful for anyone who gives it a glance. I'm just so frustrated and exhausted and feel like I'm getting pawned off on other people.

*tl;dr: Sick almost a year with recurrent flu-like symptoms, pneumonia/bronchitis 10+ times in past 6 years, no vaccines/antibiotics/steroids help, low/non-existant IgG/IgA/IgM levels along with IgG subclasses, told to start IVIG soon, worried about cost and level of urgency, running out of time to make decisions*

Thanks for taking the time to read my post

Last edited by overwhelmedd; 08-02-2011 at 09:46 PM. Reason: Spelling, TL;DR, Additional Information

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Old 08-17-2011, 11:08 AM   #2
Join Date: Aug 2011
Location: rockledge, florida, USA
Posts: 2
jlynde20 HB User
Re: Need some advice

Hi there. I have some information I could give to you regarding the low IGG, IGA, and IGM. When all three of those levels are low the disease is called common variable Immune deficiency known as CVID or hypogammaglobunemia. I am 33 now --I was born with the disease and was diagnosed at the age of 7 and I have been receiving the IVIG ( which is the IGG you need) I can not live without getting the IVIG. How much research have you done on the disease or have you found out anymore from any other dr's recently? Please feel free to ask any questions and I will give the best answers as possible. This goes for anyone that has CVID etc--

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