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Nightcrawler
Member
02-12-2002
| Saturday, September 22, 2007 - 5:14 am
I need some help/support/answers (my spelling sucks so bear with me. lots of big words spelled wrong ahead) I just came from the lung doc. for the 4th time with the newest thing wrong with me. I now have hypogammaglobinemia it means that my body is not making antibodies and has not for a long time he thinks. a little history on me. I've always been sick. more than most. I had my 1st pneumonia when I was just 9 mo old I'm now 38 and had about 14 pneumonia almost 1 every other year. until I was 23 from 23 to about 30 very little pneumonia, then in the last few year from 31 to 38. I've had 5 of them 2 just this year. it always starts out the same I can feel the rattle in my chest then start coughing it up. go see the doc, get some meds. I feel better, then in about 3 to 6 week it would either come back or stay away in the last 2 years I just could not seem to shake it. it's worse in the winter (we live in Iowa) the doc keep giving me the latest greatest big killer that just came out. and most of them worked-- I would feel great in a few weeks but it kept coming back I tried a new doc and the same. this year it would come back faster and stronger to where I was short of breath and just worn out. the xrays would show it kept coming back in my left lung. I had a ct done. it showed a golf ball sized something in my lower left lung that the xray would not go through and ct was not clear. the doc thought it could be a tumor. so off to the lung doc. he checked me out and I had a 2nd ct done. and a camera stuck down in my lung. no tumor(THANK GOD) just a really hard patch of pneumonia. take these pills and come see me in 3 weeks so I did and it came back and I got my 3rd ct done not good news the one in my left lung was smaller BUT now there was a smaller one in my right lung so he thought I had Organizing pneumonia also know as (boop) here is some really strong pills and steroids. and let's check your antibody level in your blood. come see me in 3-4 weeks so I got my blood draw done got my new meds (they were lots of $$$) the next day the doc. called and said your antibodies are really really low and to stop taking the steroids. I did as he said took my meds and 1 week after they were over I started feeling it come back-- my chest rattling and coughing again I called and told him what I was feeling and got more meds to take today I went back and got a chest x-ray done and saw the doc. he came in and said what I have and probably have had for a long time is hypogammaglobinemia he said he wanted me to have another blood draw to check my antibody level again and an aids test to rule that out. I had one of them 5yrs ago to rule that out as to why I was sick all the time (used to be an EMT.) it came back false THANK GOD he said if this is what I have (he was 80% sure that I do) it can be treated but will be lots of $$$$ I would get a transfusion of antibodies EVERY month I run, bike, and work out 4 to 5 days a week and have a 1/2 acre garden to take care of (we are part of the farmer's market) so I try to stay healthy so does anyone have hypogammaglobinemia or know more about it I will look around the net to find more about it myself any help would be great nc (edited by bookworm) ps knock on wood, none of the boys have anything like this--they are all healthy.
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Mameblanche
Member
08-24-2002
| Saturday, September 22, 2007 - 8:01 am
(((NC))) - I have no answers, never heard of this condition. Just feel the need to drop off a hug.
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Retired
Member
07-11-2001
| Saturday, September 22, 2007 - 10:38 am
(((NC))) I also have never heard of your illness so I have no answers. Will keep you in my thoughts and prayers and hope you feel better.
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Retired
Member
07-11-2001
| Saturday, September 22, 2007 - 10:49 am
NC - I found this site. Maybe it will help IDF
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Juju2bigdog
Member
10-27-2000
| Saturday, September 22, 2007 - 2:21 pm
Sorry, NC, I know nothing about it. I wonder if you ought to make a separate thread just for this question? It seems pretty important. I would put the name of the disease in the title of the thread. You could ask the mods to do it and move the posts over. And hey, you did very well on the spelling. Most of us who know and love you know it is not your strong suit.
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Mocha
Member
08-12-2001
| Saturday, September 22, 2007 - 2:55 pm
(((NC)))) I'm so sorry you've been going thru this. But thank God you and the doc now know what the problem is and have a game plan. Is your insurance going to help?? I don't know anything about this disease but I will certainly keep you in my prayers. And don't worry bout spelling, I suck at that too lol.
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Jimmer
Moderator
08-30-2000
| Saturday, September 22, 2007 - 4:33 pm
I created a separate thread for this and moved posts here, per Nightcrawler's request. I hope you can get some help with this NC.
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Pamy
Member
01-02-2002
| Saturday, September 22, 2007 - 4:58 pm
(((NC))))
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Landileigh
Member
07-29-2002
| Saturday, September 22, 2007 - 5:33 pm
nightcrawler, it is also spelled hypogammaglobulinemia, i found much more information when i used that spelling.
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Nightcrawler
Member
02-12-2002
| Saturday, September 22, 2007 - 5:57 pm
thank you landileigh I will try it this way and what did you find???
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Mocha
Member
08-12-2001
| Saturday, September 22, 2007 - 6:45 pm
Hypogammaglobulinemia is a disorder that is caused by a lack of B-lymphocytes and a resulting low level of immunglobulins (antibodies) in the blood. Immunoglobulins play a dual role in the immune response by recognizing foreign antigens and triggering a biological response that culminates in the elimination of the antigen. Antibody deficiency is associated with recurrent infections with specific types of bacteria. In pure B-cell disorders, cellular immunity generally is intact and the frequency of viral, fungal, and mycobacterial (e.g. tuberculosis) infections is not increased. There are 5 major types of immunoglobulins: immunoglobulin G, immunoglobulin M (IgM), immunoglobulin A (IgA), immunoglobulin D (IgD), and immunoglobulin E (IgE). The most common congenital abnormalities of B lymphocyte production include: Hypogammaglobulinemia (Common Variable Immunodeficiency) Ig A Deficiency X-linked Agammaglobulinemia (Bruton Disease) Transient hypogammaglobulinemia of infancy
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Mocha
Member
08-12-2001
| Saturday, September 22, 2007 - 6:46 pm
Patients with B-cell deficiencies begin having bacterial infections when aged 7-9 months, when the placental antibodies fall to undetectable levels.Symptoms are related to the severity of the immunodeficency, which may include the following: Respiratory infections Paranasal sinusitis, bronchitis, chronic cough Chronic otitis media (ear infection) Development into more serious respiratory conditions Chronic lung disease Pneumonia Chronic bronchiectasis Interstitial emphysema Gastrointestinal disorders Chronic diarrhea, weight loss and malabsorption of food secondary to Giardia Lamblia infection Autoimmune disease - Rheumatoid arthritis, vitiligo, hemolytic anemia, thrombocytopenia, and neutropenia Malignancy – risk of certain malignancies is high Growth retardation in those with early-onset recurrent infections
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Mocha
Member
08-12-2001
| Saturday, September 22, 2007 - 6:47 pm
Hypogammaglobulinemia is frequently treated with intravenous gammaglobulin (IVIG), given every three to four weeks intravenously or subcutaneously. Antimicrobial therapy should be initiated at the first sign of infection. Patients with chronic sinusitis or lung disease may need long term treatment with broad spectrum antibiotics. . Physical therapy and daily postural draining of secretions and pus from lungs and bronchi may be necessary for those who have developed bronchiectasis. For those patients suffering gastrointestinal problems or malabsorption problems, evaluation for Giardia lamblia, rotavirus, or other infections should be undertaken. In most patients with immunodeficiency and arthritis who have never received gammaglobulin, adequate treatment with gammaglobulin usually provides symptom relief.
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Mocha
Member
08-12-2001
| Saturday, September 22, 2007 - 6:50 pm
Also lot's of info here: http://www.emedicine.com/med/topic1120.htm And at that site it also mentions that the treatment is costly 
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Nightcrawler
Member
02-12-2002
| Saturday, September 22, 2007 - 7:26 pm
Mocha we found alot of the same things but yours is alot easyer to read the stuff at webmd was like talking to my doc. again the doc did say if I do have this that is will be very costly I did find the test that I'm going to have done next week it is and will do Serum Protein Electrophoresis (SPE) The serum protein electrophoresis (SPE) test measures specific proteins in the blood to help identify some diseases. Proteins are substances made up of smaller building blocks called amino acids. Proteins carry a positive or a negative electrical charge, and they move in fluid when placed in an electrical field. Serum protein electrophoresis uses an electrical field to separate the proteins in the blood serum into groups of similar size, shape, and charge. Blood serum contains two major protein groups: albumin and globulin. Both albumin and globulin carry substances through the bloodstream. Using protein electrophoresis, these two groups can be separated into five smaller groups (fractions): here is my fraction Gamma globulin. These proteins are also called antibodies. They help prevent and fight infection. Gamma globulins bind to foreign substances, such as bacteria or viruses, causing them to be destroyed by the immune system. See an illustration of the immune system. so I really hope I fale this test next week but if I do have this it would explane why I have been sick with all the lung problems.
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Juju2bigdog
Member
10-27-2000
| Saturday, September 22, 2007 - 11:03 pm
((((NC)))) And glad you got a thread of your own. Yay!!
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Ducky
Member
08-27-2000
| Sunday, September 23, 2007 - 4:52 pm
Big Ducky's oldest son had to be given Gamma globulin shots once a week when he was a little boy. Because his body did not produce the antibodies to ward of sickness. He did this for three years and now does not have any more problems. Nightcrawler hoping you find the answers you need to get better. Hugs to you and Bookworm and the boys!
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Nightcrawler
Member
02-12-2002
| Sunday, September 23, 2007 - 8:51 pm
thank all for helping and for the hugs Landileigh thanks for fixing my spelling on this I have now found lots of stuff about this. I want to make sure you all know that I fell great this last week I'm not on death door or any thing like that I do get sick alot but I aways get over it so far. the doc say if I dont start taking the antibodys the older I get. soon then later I wount get over it. if I do have this all my boys will need to be tested also they might not have it but they can be carers of it and might pass it to there kids. Bookie is never sick and so far all 4 of my boys seem to be heathy like Bookie me and my oldest (not) so litlecrawler 16yr paintballed to day for 4hr and I did not cough once and only got hit 2 times. most of the time I cough a lot in the games its hard to hide when you are caughing it was a good day all and all thanks again nc
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Mocha
Member
08-12-2001
| Monday, September 24, 2007 - 7:07 am
Yay paintball and feeling ok!!
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Grannyg
Member
05-28-2002
| Monday, September 24, 2007 - 10:29 am
yay, nc!! So glad you had a good day with that little bitty fellow who I'm sure is only 8 years old, the last time I think I saw a pic of him. lol
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Nightcrawler
Member
02-12-2002
| Monday, September 24, 2007 - 2:01 pm
lc is now 16 and 5'11" and has a car and a girlfriend so dad(5'8") does not rank so high on things to spend time with unless we are paintballing and he can shoot at me (dad shoots back )
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Grannyg
Member
05-28-2002
| Monday, September 24, 2007 - 5:05 pm
ack!!!! how in this world did he get to be 16 AND have a girlfriend?????
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Nightcrawler
Member
02-12-2002
| Wednesday, September 26, 2007 - 8:18 pm
I got my pneumonia shot today now I wait 3 weeks and they do a blood test again to see what is left of it if is gone or lower I have low antibodys growing and will need the IV's evry 30 days so here's hoping there is a lot left in me
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Sunshyne4u
Member
06-17-2003
| Wednesday, September 26, 2007 - 11:48 pm
Hypogammaglobulinemia is frequently treated with intravenous gammaglobulin (IVIG), given every three to four weeks intravenously or subcutaneously. This is a treatment that I used to set up. I assume that it is expensive in the USA. WOW you guys sure have it tough when stuff is needed. Us canadians really feel bad for you guys when we read about treatments being based on how much a person can afford. okay, I'm gonna just jump into it. I notice that you work as a Volunteer Firefighter. Have you ever been exposed to chemicals? during a test? during a real fire? I havent researched this but up here in Canada, FireFighters have such a high rate of serious diseases that they have been recognized as a High Risk occupation now fully covered by Workers comp. ALSO, if you were having Chronic Pneumonia, it is possible that your immune system is just plain Tired and worn out. My White count is rarely above 4.0 since I have chronic inflammation. even when I had Pneumonia it barely rose. When I was septic (serious blood infection) it finally rose to High NORMAL ********* If you wish to take control of your health I'd suggest that you get a full copy of your entire medical history as far back as possible. then check your Blood Protein (TPROT) and A/G ratio blood tests.(aklbumin globulin) They are commonly done as regular screening tests throughout a person's life. I am thinking that you must have been within normal limits until now OR someone would have said something. Sorry, i wish I could be more clear as I am really tired right now. Will check back here later.....take care.
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Sunshyne4u
Member
06-17-2003
| Wednesday, September 26, 2007 - 11:56 pm
Oh and most importantly, are they doing IV antibiotics for the Stubborn pneumonia? just taking pills often isnt enough to get rid of really stubborn infections. Just trying to help. I am not a doctor - am not making medical suggestions or diagnosises. Worked greater than 20 yrs in laboratory Analysis and Interpretation of Results. Oh....which reminds me, the actual WBC and Differential count of Types of White cells would be of interest when you get your records. it would be nice to know that this condition of being really low is temporary. Okay, now I'm leaving and hopefully I havent made anyone upset. I am not meaning to
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