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    <title>IPOPI Forums</title>
    <link>http://www.ipopi.org/forum/index.php</link>
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    <language>EN</language>
    <pubDate>Sun, 20 Apr 2008 00:28:29 +0100</pubDate>
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    <category>IPOPI Forums</category>
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    <item>
      <title>[General Discussion] Re: IgG subclass combinations</title>
      <link>http://www.ipopi.org/forum/read/1/1784/3556.html#msg-3556</link>
      <author>noahsmom</author>
      <description><![CDATA[I just found out that I am IgG 4 deficient. The other subclasses are normal. I also have almost no IgM's (13). I was also told that they don't really know what IgG4 does. I also am not showing a very good response to the tetanus vaccine. It went really high for a short time after revaccinating (&gt;7.00) and now 4 months later it's down to 1.77. I'm supposed to go back in 4 months to check it again.

Stacy]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/1784/3556.html#msg-3556</guid>
      <pubDate>Sun, 20 Apr 2008 00:28:29 +0100</pubDate>
    </item>
    <item>
      <title>[General Discussion] unspecified immune disorder</title>
      <link>http://www.ipopi.org/forum/read/1/3555/3555.html#msg-3555</link>
      <author>HAZEY</author>
      <description><![CDATA[My son now 4 has an unspecified immune disorder. I NEED some help. He has autism,mild heart conditions,asthma,subglotic stenosis, tracheomylasia,GERD,&amp; recurrent pneumonia with sinus infections. He has had numerous ent surgeries including steel tubes in ears 3 times.He has had nissen fundoplication surgery with a G-tube for the GERD. He was one a ventilator for 2 weeks because of strep throat &amp; developed pneumonia during that time.As of today he has had about 20 to 25 bouts of pneumonia. He has been on ivig treatments for 5 months. He has been on preventive antibiotics for 13 months 3 times a week. With the exception when he is sick, then an every day antibiotic.His igm is 45,he has very low responses to pha stimulation,concanavalin a,&amp; pokeweed mitogen. He has had genetic studies thatare normal.He is negitive for celiac. His dr. said he has lymphocyte proliferation disorder.That is an unspecified immune disorder. He has now been refered to N.I.H. Duke was of no help! Is any one out there that can help?]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3555/3555.html#msg-3555</guid>
      <pubDate>Fri, 18 Apr 2008 16:31:39 +0100</pubDate>
    </item>
    <item>
      <title>[General Discussion] more confused</title>
      <link>http://www.ipopi.org/forum/read/1/3554/3554.html#msg-3554</link>
      <author>pbjmom</author>
      <description><![CDATA[Okay, so I saw my immuno on Thursday and he had all my labs back but he basically said they were inconclusive.  $2000+ worth of tests and they were inconclusive, imagine that!  He said I definitely have Selective IgA deficiency and probably Selective IgM deficiency.  I have zero IgE so I'm not allergic, whatever that means.  I have borderline Subclass IgG1 deficiency but not enough to automatically say I need IvIG.  He says I have protection against tetanus (protein based) but no protection to Hib and only have protection to 2 of the 7 strains of pneumococal.  He wants me to have the Hib vaccine again and in 4-6 weeks have another titer for it and the pneumococal since he revaccinated me 2 weeks ago with it.  If I don't mount an antiobody to those then he said I could have Specific Antibody Disorder and then he might consider lumping everything together under CVID and might consider IVIG.  He said right now he would just treat any infection agressively with antibiotics and that I might need to go on them prophylactically.  Interestingly enough though, my WBC was 15.1 which he said indicated an infection somewhere, but he wasn't going to pursue it because I am on prednisone and we probably would not be able to find the infection in the first place.  Also interesting was my neutrophil percent and neutrophil absolute were extremely high which indicates that the Sweet's syndrome is still active in my system despite the torturous months of steroids. Also, my ANA screen came back as positive with a homogenous pattern but a low titer of 1:40 so he said don't worry about it.  From everything I have read, a positive homogenous pattern of ANA indicates Lupus, so how should I not worry about it???  Good news was my complement levels were fine and my IGG levels were good.  The immuno said it may be a quality issue not a quantity issue for me but we just don't know right now.  The other weird result was with the liver panel.  My SGPT(ALT) was extremely high and the alkaline phosphatase was extremely low.  He wants to redo that test in 6 weeks when we do the vaccine titers because that could be where the infection is hiding out or it could be the beginning of something going on with my liver.  He tried to downplay it but I could tell he wasn't being completely truthful about it.  
So basically he said I have 5 different disorders which he may be willing to lump together under CVID if I don't mount antibodies to the vaccines and then I MAY be able to have IVIG except that with a positive autoimmune response with IgA i would not be able to tolerate IVIG with high levels of IgA.  So I really don't know much more than I did to begin with except that I am sick of being sick and he doesn't really have anyhting else to offer me.  The only good thing that came of the visit was I was able to talk him into a compromise on the Prednisone and got it reduced from 10mg to 7.5 mg for 2 more weeks then drop to the 5mg instead of staying on 10mg for 2 more weeks.  Any change in prednisone is positive where I'm concerned.
Anybody else out there with such a conglomeration of disorders?? I am so frustrated and exhausted and I feel like I am the one who is having to do all the work here; that the doctor is just spitting out numbers and then leaving it up to me to figure it all out.  But I can't figure it all out and this having to wait around for more labs is killing me.  I even have to find some place that has the Hib vaccine on my own because his office doesnt have it and neither does my GP.  This is starting to border on ridiculous!  SorryI'm ranting, I just need answers and they are not coming easily!!!]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3554/3554.html#msg-3554</guid>
      <pubDate>Sat, 12 Apr 2008 20:05:54 +0100</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: CVID?</title>
      <link>http://www.ipopi.org/forum/read/1/3531/3553.html#msg-3553</link>
      <author>Phoebe</author>
      <description><![CDATA[Emmie - there are more tests you can ask for.  First of all, find out if he tested your IgG subs, or just overall IgG. Some people have normal overall IgG, but are low in one of the four subclasses (IgG1, IgG2 etc.).  Here's a link: http://www.primaryimmune.org/pubs/book_pats/e_ch10.pdf  
Doctors who aren't familiar with primary immune deficiencies are likely to test only the overall levels and not know to test the subclasses or not know that you can have a subclass deficiency and be symptomatic. 

Finally, even if your levels are all normal and your subclasses are normal, you still might have other parts of your immune system malfunctioning.  Some people have normal levels of immunoglobulin, but an impaired antibody response (e.g. you have a basketball team, but they don't show up to play).  This is tested by measuring your antibodies to pneumonia, giving you the pneumovax, and then having you wait a month and remeasuring the antibodies (through blood tests) to see if you mount an adequate response to the pneumovax. They may also use other vaccines, such as Tetanus.  If you flunk the pneumovax, even if you have normal levels of immune globulins, they aren't doing their job and you can benefit from IVIG.

You might want to look for an immunologist with expertise in immune deficiency.  A lot of asthma docs really aren't that knowledgeable.  

Good luck.

Shawne]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3531/3553.html#msg-3553</guid>
      <pubDate>Sun, 06 Apr 2008 03:18:55 +0100</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: Sweet's syndrome and CVID?</title>
      <link>http://www.ipopi.org/forum/read/1/3551/3552.html#msg-3552</link>
      <author>CVIDkatie</author>
      <description><![CDATA[I'm so sorry to hear of your struggle. I was just diagnosed with CVID and have significant joint pain, but i'm not far enough along in the process to have done anything about it yet. I have a consulatation at UVA in May. I have never heard of Sweet's disease.

However, I also suffer from depression. I'm on Lexapro for PTSD (hurricane katrina), and the constant sickness and fatigue only worsens the situation, and can become a vicious cycle. For me, the pain, infection, and fatigue are very overwhelming and upseting, which then gets me all worked up, which makes it more overwhelming, which stresses the body, and then it all becomes worse. A doctor I had several years ago gave me Xanax on an as-needed basis. When I would feel at my worst physically, the anti-anxiety effect of the medication would help me cope and keep it from getting worse. It would aid me in getting the complete rest i needed to recover and defend against illness, instead of the worry-ridden rest I was used to.

I'm sorry I can't help much with the pain - I'm trying to work through that myself. You know those times where everything hurts so much that you don't know what to do? The Xanax (there are many other types and brands you can talk to your Psych about) has helped me deal with that emotional pain, and made it slightly easier to cope.  

Best of luck. You're welcome to email me at CVIDkatie@gmail.com if you want to talk.]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3551/3552.html#msg-3552</guid>
      <pubDate>Thu, 03 Apr 2008 20:33:25 +0100</pubDate>
    </item>
    <item>
      <title>[General Discussion] Sweet's syndrome and CVID?</title>
      <link>http://www.ipopi.org/forum/read/1/3551/3551.html#msg-3551</link>
      <author>pbjmom</author>
      <description><![CDATA[Has anyone ever heard of Sweet's syndrome?  10 years ago I was diagnosed with Selective IgA deficiency but was basically told there was nothing I could do for it except for prevention of illness.  Then 6 years ago I was pregnant and gave birth to a beautiful boy.  My pregnancy changed everything.  For 4 years, I was perfectly healthy.  For the past year however, my health has been declining with more and more illnesses, joint pain (which was diagnosed as fibromyalgia)and now this Sweet's syndrome.  The doctor says it is a reactive disorder to a problem with the immune system so she sent me to the immunologist who is now convinced I have CVID, not selective IgA and wants me to start on IVIG soon.  This has really freaked me out.  In 6 weeks, I went from having a disorder there was nothing I could do about to having CVID which requires transfusions and prophylactic antibiotics.  The cost alone is beyond my comprehension.  Even though I have employer based insurance which is really good, I will reach a lifetime maximum in nothing flat.  I make too much money to qualify for Medicaid but not enough money to pay for treatments.  What am I supposed to do?  To make matters worse, the treatment for Sweet's syndrome is high levels of Prednisone for 3-4 months.  I also have major depressive disorder with PTSD and the prednisone is wreaking havoc with my mood.  My doctor has place me on 3 days of medical leave because I am just so depleted.  I have no energy and want to do nothing.  I have never felt this exhausted in my life.  My doctor says it is the prednisone, but I'm really worried that I have become very depressed with the overwhelming amount of information that has come my way and with this syndrome.  I feel so incredibly alone and empty.  I do see a therapist and have family around, but my family is usually more a hindrance than a help.  Is there anyone who might have any advice or suggestions?  I just feel at wit's end.]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3551/3551.html#msg-3551</guid>
      <pubDate>Wed, 02 Apr 2008 19:44:18 +0100</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: CVID and pain</title>
      <link>http://www.ipopi.org/forum/read/1/3547/3550.html#msg-3550</link>
      <author>JumpinJack</author>
      <description><![CDATA[Well.

I just finished by immune IV.

I was born with Hypo gamma goblun anemia.

I was told I wouldn't see 25 years of age.

Yep...Here I am.  52 years old and still kickin.

Yep...got the same issues ...but ain't nobody shooting at me nor is their bombs going off in my yard...I am grateful for my life.

I have been receiving gamma goblun all of my life.

Yep sometimes it is overwhelming.

Yep,  sometimes you can't talk to anyone about it.

But.   I have a healthy 14 year old son that is healthy as a horse and
I have been blessed with the ability to make a pretty fair living.

But.   Life is a struggle.

Don't give up.

I pop alot of excidren and ibuprofen also....but basically I reached a point where they don't work to well.

Hot tubs work well.   Hot water works well.   

Lifting weights helps.

Well.. this is about all the fun I can take.

GOD bless and don't give up.

JumpinJack]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3547/3550.html#msg-3550</guid>
      <pubDate>Sat, 29 Mar 2008 02:03:21 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: CVID and pain</title>
      <link>http://www.ipopi.org/forum/read/1/3547/3549.html#msg-3549</link>
      <author>pmiller0122</author>
      <description><![CDATA[I am 49 and was diagnosed with CVID at age 48.  The treatments have helped tremendously, however, I have also noticed that my joints ache all the time now.  I haven't had any workup on this as yet, but the IVIG treatments have made a huge difference in me not getting sick.  Anyway, I hope this information helps you.  Hang in there.]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3547/3549.html#msg-3549</guid>
      <pubDate>Thu, 27 Mar 2008 02:36:36 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: I'm about to start IVIG to treat CVID. Any advice?</title>
      <link>http://www.ipopi.org/forum/read/1/3424/3548.html#msg-3548</link>
      <author>lilylou98</author>
      <description><![CDATA[I'm a 42 year old female, who may need to have IVIG. I have long suffered from chronic sinus infections (had three surgeries, most recently in Dec.) that respond to antibiotics but it never really goes away. Currently I am on an antifungal rinse for my sinuses and they are better. My ENT asked my allergist/immunologist to run levels. I had them two years ago and all was good. My allergist/immunologist ran the bloodwork and my immunoglobulin levels were all in the normal range but my G level was toward the low end of normal. My others were all good. My tetanus and pneumovax vaccine levels were low but not totally absent. He repeated my vaccines and in 30 days we will retest those levels and proceed from there. He said he may go ahead and treat me with IGg. I am absolutely terrified. I can't eat, I can't sleep...Any advice? I'm scared out of my mind and don't know how to cope. My husband told me today he is going to block the computer at home so that I can't log on and read about CVID. I'm making myself crazy. I'm crying all the time. Some of the things I've read are making me so nervous and plain scared. In the midst of all of this I'm trying to teach my students...

How do you cope? I would appreciate any input. Thanks!]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3424/3548.html#msg-3548</guid>
      <pubDate>Wed, 26 Mar 2008 13:17:49 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] CVID and pain</title>
      <link>http://www.ipopi.org/forum/read/1/3547/3547.html#msg-3547</link>
      <author>CVIDkatie</author>
      <description><![CDATA[I was diagnosed with hypogammaglobulinemia as a child. A few years of daily antibiotics and I was better for a number of years. Now at 29 things have been much worse; last month I was re-tested and diagnosed with CVID. IGIV has been recommended and I'm headed to another specialist in May. I have all the normal chronic infections, but my question is about aches and pains. At times the joint pain is unbearable. In all honesty, I nearly abuse Advil and Tylenol, taking it several times a day, and my general practitioner advised that it could be causing some of the gastrointestinal problems. Does anyone have any recommendations? Will this symptom be relieved with IVIG treatment? I used to be on Vioxx and Bextra when they were on the market. I was tested for Lupus once, but that was negative. I also don't have arthritis. Any advice would be appreciated!]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3547/3547.html#msg-3547</guid>
      <pubDate>Wed, 26 Mar 2008 03:06:07 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: questions about hyper IgE/ Job's syndrome</title>
      <link>http://www.ipopi.org/forum/read/1/3453/3546.html#msg-3546</link>
      <author>jack2443</author>
      <description><![CDATA[It's actually quite easy to get in to NIH in Bethesda, MD.  I called and in less than a month I was there.  Here's a number you can call.  (301) 402-0449.  This is a number to a nurse at NIH that can spend a few minutes on the phone with you, asking you detailed questions about your child.  She will then forward your information to the chief doctor in charge of the clinical trails for final approval.  If your child fits most of the Job symptoms, then they will be interested in getting you there for evaluation.  The more patients they have to study, the better their efforts are.  They're helping you, and you're helping them.  It's a win-win situation.  They need as many candidates as possible in order to learn as much as they can about this disease, which in turn, helps our children.  Now, once the nurse gets the final approval from the chief physician, then she will get you in contact with the financial aid counselor who will take your information over the phone.  No forms to worry about.  The purpose of this financial aid is simply to cover your travels there and your hotel.  The hospital/clinic itself (and all the medicine they prescribe) are totally 100% free.  As a matter of fact, no one, at any point, will ever ask you about health insurance.  Ever.  If you qualify, then they will arrange for your travel and lodging.  If you do not qualify then you will be responsible for getting yourself and your child there for the first visit.  But all subsequent visits are paid for by the clinic.  Very easy to get started.  Simply call that number above.  I hope this helps!  Let me know how it goes.  Good luck!]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3453/3546.html#msg-3546</guid>
      <pubDate>Tue, 25 Mar 2008 02:32:52 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: questions about hyper IgE/ Job's syndrome</title>
      <link>http://www.ipopi.org/forum/read/1/3453/3545.html#msg-3545</link>
      <author>jack2443</author>
      <description><![CDATA[It's actually quite easy to get in to NIH in Bethesda, MD.  I called and in less than a month I was there.  Here's a number you can call.  (301) 402-0449.  This is a number to a nurse at NIH that can spend a few minutes on the phone with you, asking you detailed questions about your child.  She will then forward your information to the chief doctor in charge of the clinical trails for final approval.  If your child fits most of the Job symptoms, then they will be interested in getting you there for evaluation.  The more patients they have to study, the better their efforts are.  They're helping you, and you're helping them.  It's a win-win situation.  They need as many candidates as possible in order to learn as much as they can about this disease, which in turn, helps our children.  Now, once the nurse gets the final approval from the chief physician, then she will get you in contact with the financial aid counselor who will take your information over the phone.  No forms to worry about.  The purpose of this financial aid is simply to cover your travels there and your hotel.  The hospital/clinic itself (and all the medicine they prescribe) are totally 100% free.  As a matter of fact, no one, at any point, will ever ask you about health insurance.  Ever.  If you qualify, then they will arrange for your travel and lodging.  If you do not qualify then you will be responsible for getting yourself and your child there for the first visit.  But all subsequent visits are paid for by the clinic.  Very easy to get started.  Simply call that number above.  I hope this helps!  Let me know how it goes.  Good luck!]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3453/3545.html#msg-3545</guid>
      <pubDate>Tue, 25 Mar 2008 02:32:27 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: questions about hyper IgE/ Job's syndrome</title>
      <link>http://www.ipopi.org/forum/read/1/3453/3544.html#msg-3544</link>
      <author>jack2443</author>
      <description><![CDATA[It's actually quite easy to get in to NIH in Bethesda, MD.  I called and in less than a month I was there.  Here's a number you can call.  (301) 402-0449.  This is a number to a nurse at NIH that can spend a few minutes on the phone with you, asking you detailed questions about your child.  She will then forward your information to the chief doctor in charge of the clinical trails for final approval.  If your cihld fits most of the Job symptoms, then they will be interested in getting you there for evaluation.  The more patients they have to study, the better their efforts are.  They're helping you, and you're helping them.  It's a win-win situation.  They need as many candidates as possible in order to learn as much as they can about this disease, which in turn, helps our children.  Now, once the nurse gets the final approval from the chief physician, then she will get you in contact with the fiancinal aid counselor who will take your information over the phone.  No forms to worry about.  The purpose of this financial aid is simply to cover your travels there and your hotel.  The hospital/clinic itself (and all the medicine they prescribe) are totally 100% free.  As a matter of fact, no one, at any point, will ever ask you about health insurance.  Ever.  If you qualify, then they will arrange for your travel and lodging.  If you do not qualify then you will be responsible for getting yourself and your child there for the first visit.  But all subsequent visits are paid for by the clinic.  Very easy to get started.  Simply call that number above.  I hope this helps!  Let me know how it goes.  Good luck!]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3453/3544.html#msg-3544</guid>
      <pubDate>Tue, 25 Mar 2008 02:31:31 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: questions about hyper IgE/ Job's syndrome</title>
      <link>http://www.ipopi.org/forum/read/1/3453/3543.html#msg-3543</link>
      <author>jack2443</author>
      <description><![CDATA[It's actually quite easy to get in to NIH in Bethesda, MD.  I called and in less than a month I was there.  Here's a number you can call.  (301) 402-0449.  This is a number to a nurse at NIH that can spend a few minutes on the phone with you, asking you detailed questions about your child.  She will then forward your information to the chief doctor in charge of the clinical trails for final approval.  If your cihld fits most of the Job symptoms, then they will be interested in getting you there for evaluation.  The more patients they have to study, the better their efforts are.  They're helping you, and you're helping them.  It's a win-win situation.  They need as many candidates as possible in order to learn as much as they can about this disease, which in turn, helps our children.  Now, once the nurse gets the final approval from the chief physician, then she will get you in contact with the fiancinal aid counselor who will take your information over the phone.  No forms to worry about.  The purpose of this financial aid is simply to cover your travels there and your hotel.  The hospital/clinic itself (and all the medicine they prescribe) are totally 100% free.  As a matter of fact, no one, at any point, will ever ask you about health insurance.  Ever.  If you qualify, then they will arrange for your travel and lodging.  If you do not qualify then you will be responsible for getting yourself and your child there for the first visit.  But all subsequent visits are paid for by the clinic.  Very easy to get started.  Simply call that number above.  I hope this helps!  Let me know how it goes.  Good luck!]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3453/3543.html#msg-3543</guid>
      <pubDate>Tue, 25 Mar 2008 02:29:08 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: hyper IgE + enlarged lymph nodes</title>
      <link>http://www.ipopi.org/forum/read/1/3516/3542.html#msg-3542</link>
      <author>jack2443</author>
      <description><![CDATA[My daughter, who was diagnosed at 18 mos., (now 8 yrs. old) also had several enlarged lymph nodes, mostly in her head and neck area.  She too has been tested for &quot;bad malignancies&quot;, and all have been negative.  I've been told that this is common in her condition.  I've been told that hyper IgE is (among sorts) a mis-wire in communication between the brain and the immune system.  Because of this mis-communication, the body inadvertantly reacts to things (almost anything) as if it were bad/harmful.  We were all previously taught that swollen lymph nodes means that the body is fighting an infection.  Which is still true, howver, in hyperIgE patients (although they still coud be fighting off an infection) sometimes it just the &quot;mis-communication&quot; and the body is reacting to nothing.  If your cihld has severe excema however, the swollen lymph nodes could be a reaction to a recent excema flare-up.  My daughter's lymph nodes always swelled the biggest when her excema was at it's worst, or when her asthma was acting up.]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3516/3542.html#msg-3542</guid>
      <pubDate>Tue, 25 Mar 2008 02:13:51 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: Hyper IgE Syndrome (HIES) (Job Syndrome)</title>
      <link>http://www.ipopi.org/forum/read/1/3430/3541.html#msg-3541</link>
      <author>jack2443</author>
      <description><![CDATA[Hello Lisa,  my daughter is the one (in the thread above) who was taken to NIH in Bethesda, MD.  Since you are right there in VA, I highly recommend trying to see them.  I have the email address to the chief doc. in charge of the Job studies.  Her name is Dr. Alexandra Freeman.  If you qualify financially, they will pay for your cost to get to there, and they will arrange for you and your child to stay (free) in the Children's Inn right next door to the clinic.  They will do a FULL work-up of your child (blood, urine, dermatology, immunolgy, allergy, asthma, dental examinations, x-rays, MRI's, CAT scans, dexa-scans (bones density scans) and a genetics consultation).  They will examine your child's DNA, genetic coding, genetic history, medical history....you name it, they research it.  They will answer ALL of your questions and concerns.  And they don't make you feel like your child is a science experiment.  They are very personable, very sympathetic, very friendly, very helpful.  We were there 3-4 days and I have absolutley no complaints at all.  And, since they are a government funded organization, no health insurance is ever required.  They won't even ask you about it.  Everything it FREE.  In the event that you don't qualify financially for them to pay for your travels and hotel costs, then your only expense will be getting there, and your hotel.  The hospital and all the medicince they prescribe you are totally free.  They will do an initial work-up at your first visit.  IF they determine that your child is truly a Job patient, then they will want to see him back no less than once a year for follow-up, and those subsequent visits are totally free (they will pay for your travel and hotel).  When they release you back home, they will work closely with your doctors back home to make sure that the doctors there know what your child's diagnosis is and how to properly care for him.]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3430/3541.html#msg-3541</guid>
      <pubDate>Tue, 25 Mar 2008 02:07:28 +0000</pubDate>
    </item>
    <item>
      <title>[Guestbook] Re: Hypogammaglobulinanemia</title>
      <link>http://www.ipopi.org/forum/read/2/2666/3540.html#msg-3540</link>
      <author>JumpinJack</author>
      <description><![CDATA[Hey Annette..

Yep...Just like everyone else.  I am a 52 year old coot that has all of
the issues that everyone has.

You know.  I get about 38 or 40 grams twice a month.  Since about 1960.

The infusions are not that bad.  I used to get them in my butt cheeks
up to about 10 years ago.

That was a little tough.  Yep...the joint pain is pretty cool...yep..
the infections are kinda exciting...but I will tell you this.

You will be OK.   Don't give up.   Live life.  Enjoy life.  Do whatever
you can do....and bear it.

Yep...I raced motorcycles, vollyball, wallyball, running, raced snowmobiles, skied....enjoyed my life.

Can't do that stuff now.   But  I have good memories.

take care and don't give up..!

older than dirt and twice as smelly

Jumpin Jack]]></description>
      <category>Guestbook</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/2/2666/3540.html#msg-3540</guid>
      <pubDate>Sun, 23 Mar 2008 21:15:45 +0000</pubDate>
    </item>
    <item>
      <title>[Guestbook] Re: About to start IV Ig therapy - questions</title>
      <link>http://www.ipopi.org/forum/read/2/2849/3539.html#msg-3539</link>
      <author>JumpinJack</author>
      <description><![CDATA[Hey young lady....Don't give up.

It is a drag some days.  I am diggin what your saying about spouse's.
I am 52 years old.  The doc says I could have had all of the boys that
I wanted...my type of immune problem skips the boys.

Yeah...I get about 40 grams twice a month.   I have recieved them every
month since I was about 5 years old.  yep!  that was back in 1960.

Yeah...sometimes life is a drag.  Work....relationships...and PAIN.

But...pop a few aspirin ...OK...maybe about 9 or 10 a day...

I am grateful for being born here in the USA...I can guarantee that if 
you or I would have been born in a country that is less fluent...we probably would have been in Heavon.

well ...see ya.

older than dirt and twice as smelly

Jumpin Jack]]></description>
      <category>Guestbook</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/2/2849/3539.html#msg-3539</guid>
      <pubDate>Sun, 23 Mar 2008 21:06:14 +0000</pubDate>
    </item>
    <item>
      <title>[Guestbook] New dude</title>
      <link>http://www.ipopi.org/forum/read/2/3538/3538.html#msg-3538</link>
      <author>JumpinJack</author>
      <description><![CDATA[Hmmm.   I am a 52 year old that has had hypogammagoblunanemia all of my
life.

Lost half of my lung when I was 6.   That was pretty cool.

Are there any other old farts out there that enjoy this blood disorder?

Just like all of you.  Some great days.  Some bad days.

But ......I am grateful.

well.  that's about it.

older than dirt and twice as smelly
jumpin jack]]></description>
      <category>Guestbook</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/2/3538/3538.html#msg-3538</guid>
      <pubDate>Sun, 23 Mar 2008 20:59:35 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: Hyper IgE Syndrome (HIES) (Job Syndrome)</title>
      <link>http://www.ipopi.org/forum/read/1/3430/3537.html#msg-3537</link>
      <author>Alice Rowell</author>
      <description><![CDATA[Hello Floss

Nice to meet you, sorry it's over having poorly children. Try and get your daughter referred to Prof. Cant at Newcastle General, he's the top man for this condition. If you've been following this thread you'll see that our son Sam (15) has been seeing him and he was the one who diagnosed Sam with Job's and since following all his medical advice Sam has been leading a relatively healthy life. Sam has to take prophylactic antibiotics and anti-fungals every day. Please contact me directly on alice@quay-design.co.uk if you need to chat about this further.

Ax :)]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3430/3537.html#msg-3537</guid>
      <pubDate>Wed, 19 Mar 2008 07:28:23 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: Hyper IgE Syndrome (HIES) (Job Syndrome)</title>
      <link>http://www.ipopi.org/forum/read/1/3430/3536.html#msg-3536</link>
      <author>Floss</author>
      <description><![CDATA[Hi Everyone

Just come across this forum, my daughter Caitlin was diagnosed with Hyper IgE Syndrome when she was 2 1/2 with an IgE count of nearly 30,000 she is now 11. She has been ill from the day she was born.

At first the Health Visitors and Doctors said her severe eczema was all my fault, wrong washing powders etc. she saw a dematologist at our local hospital who gave her a skin wash and discharged her after 6 weeks, I kept going back to our GP (I saw every one in our surgery) the last one was not happy that we had been discharged from the hospital and she referred us back to a private consultant who is marvelous. He took biopsies and gave us all sorts of lotions and potions he also referred us to a Cranial Osteopath as Caitlin didn't sleep (20 mins at a time if we were lucky) this was a godsend. When she was about 15 months old she started to get boils on her head, she went to theatre 3 times to have them removed, this was when our Consultant tested for HIES, during the first 2 years of her life we must have seen at least 50 Drs as we used to go to special consultation days.

We have been going to Bristol hospitals eversince the diagnosis, we have not met anyone else with this condition. Caitlin has broken the same arm twice in 9 weeks, had numerous chest infections, loads of ear infections, bad skin constantly, been a hospital inpatient on a number of occasions and been until last May on Co-Amoxiclav and Flucloxicillin all the time. Since stopping the anti-biotics she has had two operations on her eye for infected cysts, an absess under her arm which burst, another on her neck and two more on her head all of which have been treated as an inpatient at our local hospital not Bristol. Three of these episodes she was diagnosed and treated for MRSA with IV Vancomycin and oral Fucidin. The Drs can never seem to agree how long she should have the IV's for! She has been decolonised 3 times but it doesn't seem to work.

She has only had one of her baby teeth fall out naturally all the rest so far have had to be surgically removed, she has had a brace for the last 2 years. Caitlin also has hyper mobile joints and complains of aching joints especially her legs but nothing shows up on xrays as yet. She also has the facial features for HIES, on the whole she is a happy little girl but at times I wonder how much more she can take. I can see another trip to the Drs looming as she is complaining of pains round her chest and back.

Its nice to know that there are other people in the same position as us.]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3430/3536.html#msg-3536</guid>
      <pubDate>Tue, 18 Mar 2008 20:15:57 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: Are son is sick and we feel alone</title>
      <link>http://www.ipopi.org/forum/read/1/3383/3535.html#msg-3535</link>
      <author>Liamsmom</author>
      <description><![CDATA[Just wanted to let you know that as soon as I read your subject line I felt the need to post something - because for a long time I also felt the same way - but as time goes by I realize that the search for knowledge- answers and support is so necessary.  My son is now 11 and was diagnosed at age 7 - I cried when we got his diagnosis of CVID because finally there was something concrete as opposed to chronic illness, hospitalization - you name it.  We still feel alone - especially when he is sick.. We have IVIG infusions every three weeks - and he is premedicated prior to and following infusions - for side effects such as vomiting - rash - major headache.   Also he has just been diagnosed with an adrenal insufficiency - wondering if anyone else has this diagnosis in conjunction with the CVID?  Liam plays hockey, ball and is an excellent student - even when missing over 42 days of school on average per year. So good to be able to read about others and be part of something!]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3383/3535.html#msg-3535</guid>
      <pubDate>Sat, 15 Mar 2008 14:31:32 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: Sub-q/Vivaglobin - Help!</title>
      <link>http://www.ipopi.org/forum/read/1/3273/3534.html#msg-3534</link>
      <author>KeelieyOHara</author>
      <description><![CDATA[Hi,

I get Vivaglobin Sub-q 63ml/wk.  I also get leaking at the insertion sites while infusing.  My nurse has helped me to see that lying prone (down on back) takes pressure off of abdominal infusion sites and helps the IG saturate the area around the needle insertion WITHOUT leaking.

There are trade offs to everything.  Personally,, I'd rather be receiving Vivaglobin at home sub-q, than doing IVIG in a &quot;Money-Hungry&quot; passionless infusion room in a hospital or oncology center.  As far as side effects, well,, mine are pretty minimal,, and if I pre-treat with 50mg. Benedryl and a Lortab,, I am good to go.  Everything in life is manageable with a little forethought and imagination.

Good Luck

Keeliey O'Hara]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3273/3534.html#msg-3534</guid>
      <pubDate>Sat, 15 Mar 2008 00:04:46 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: CVID?</title>
      <link>http://www.ipopi.org/forum/read/1/3531/3533.html#msg-3533</link>
      <author>Emmie</author>
      <description><![CDATA[Thanks, will do that too! :)]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3531/3533.html#msg-3533</guid>
      <pubDate>Thu, 13 Mar 2008 09:17:25 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: CVID?</title>
      <link>http://www.ipopi.org/forum/read/1/3531/3532.html#msg-3532</link>
      <author>Alice Rowell</author>
      <description><![CDATA[Can I suggest you also ask this question on the PIA (Primary Immunodeficiency Association) Forum, they have  a very active discussion section with people from all over the world.

www.pia.org.uk/forum/index.php

Cheers
Ax :)]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3531/3532.html#msg-3532</guid>
      <pubDate>Thu, 13 Mar 2008 07:21:01 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] CVID?</title>
      <link>http://www.ipopi.org/forum/read/1/3531/3531.html#msg-3531</link>
      <author>Emmie</author>
      <description><![CDATA[I am currently having a discussion with my asthma doctor. I have been having recurrent infections since the age of 16 (now 37). It started with me having my first otitis ever at 16, then moved on to recurrent sinuitis for 5 or 6 years. Then bronchitis and/or pneumonia 4-6 times a year. I have caught pneumonia due to mycoplasmosis three times now. 

He blames it on me, that I would not be taking my asthma medication. I am indeed taking it, probably more compliant than most patients. I measure my PEF regularly at home and adjust the doses accordingly. As I work within the medtech field we have clinical staff at the office, and all our nurses have suggested CVID as the reason for me getting all these infections.
I asked my doctor for blood tests, he took IgA, total IgG and IgM. I havenīt seen the results myself, but he says they are within normal range. No further investigation so far. 

My question to you is: are there any more tests I can ask for? I am now on my second treatment with antibiotics this year and it is not even April yet. Somethingīs gotta be wrong and I am eager to find out what.]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3531/3531.html#msg-3531</guid>
      <pubDate>Wed, 12 Mar 2008 15:27:59 +0000</pubDate>
    </item>
    <item>
      <title>[Guestbook] Re: CVID</title>
      <link>http://www.ipopi.org/forum/read/2/2616/3530.html#msg-3530</link>
      <author>JCroft5</author>
      <description><![CDATA[Hi Rhonda,

I don't know if you have already applied to Social Security or not, as this message was old and I just came across it.  But I still wanted to give you my help if you can still use it (or if anybody else comes across this board with Social Security ?'s).  I am 31 years old and was diagnosed with CVID in May of '06.  I had severe reactions to IVIG and insurance difficulties (to put it mildly).  During this time I was trying to work nights as a youth counselor, I have three young children, and was a foster Mom as well.  I was put on State Disability (SDI) by my doctor but had to go off of it quickly as the pay was so low and my lifestyle (California mortgage) did not agree with SDI :-).

After battling with being sick and having family members tell me that I HAD to apply for Social Security I asked my doctor what she thought.  She said &quot;finally&quot;!  She thought that I should apply, that I needed to apply, and that she'd help in any way possible.  She told me that if I kept on doing all the things I was doing I wouldn't be around for my kids!  That was a very serious shock to me.  Not to mention I couldn't physically do 1/2 of the things I wanted to do at the time.  Oh, also I was in school full-time too (online though) and was about to graduate with my Bachelors at the same time I was applying for Social Security.  There were definitely some low points there as I am a very independant and motivated person and slowing down, almost to a hault was hard, but necessary.  

Applying for Social Security was very hard, but once I made my mind up I knew I had to.  I did a LOT of reading and research before applying as I found out that Social Security is tricky.  My doctor wrote a letter stating &quot;poor prognosis&quot; and I hand-delivered ALL of my medical records (labs, notes, etc.) to my local Social Security office.  I applied online and this took several days but I wanted everything to be accurate.  I cited the code of 14.07 from the Social Security's list of automatically disabiling conditions many times in my application.  CVID falls under this code.  If you go under the socialsecurity.gov website and look under automatically qualifying conditions, look under immune system and read what is under 14.07.  Once my case was assigned to a (can't remember his title, but the person who would handle the case through the end) I made sure he knew me by name and eventually he didn't even need to look my info he new who I was because I was in constant contact with him.  This is a very fine line because you don't want to make this person mad!  I was very upfront and honest with him and let him know that I had contacted a social security attorney and have provided all the info that the attorney suggested.  I let him know that my docs would provide more info if necessary, etc.  Then of course I waited...

Eventually he sent me to see a Social Security doctor.  This was a low point for me.  The office was terrible, it smelled, and I was sick for weeks after going there...but I went!  I went with all of my medical records in hand for the Social Security doc to review.  I spent hours highlighting all of the important findings in my labs so she could review them.  I think that this was very important as I'd been told many times that &quot;I don't look like I have CVID&quot;, well I FEEL like I do...and the medical records show that I do and that helps a lot when you have to convince a complete stranger that you are in deed, sick.  When this report got back to the man handling my case I called to check the status (the total time now was about four months from when I'd applied).  He told me that they were sending me to a psychologist to check for depression.  I can honestly say that this was the most frutrating part of the whole process.  After all of the medical proof I had provided they want to send me to a mental health doc??  Luckily he gave me some time on the phone and I explained that nobdoy could go through all of this illness, stopping work, not doing so many things due to CVID without dealing with a little depression.  Who wants to go on Social Security at 30?  It's not like they give you millions:-)  This was not a choice but a necessity and I told him that.  I also told him that I was not depressed but extremely frustrated.  Then I cited to him over the phone that code of 14.07 and he didn't realize that it was in my report...then he looked for my report and paperwork while we were on the phone.  And.....they were all missing!!!  Turns out that nobody had ever read my information.  Sending me to the Social Security doctor was standard practice and had nothing to do with reading my labs.  I reminded him that I hand-delivered my medical records into the office, but *poof* they were gone.  I had my doctor's office fax everything (my thick chart!) over to him that day and I faxed over a letter explaining (yet again) the code of 14.07, that my condition meant that I automatically qualified and that I would do whatever I could to &quot;help&quot; him with any info needed.  I also mentioned again that I'd speak to my attorney.  Granted, I don't have big bucks and did not hire an attorney, I simply spoke to a Social Security attorney through my Prepaid Legal (I love this service so much!!).  I got a call the next day from the man handling my case notifying me that the appointment with the psychologist was cancelled!  Yes!  This man who handled my case is the person who reccomended whether or not I was approved.  After all that happened he told me just days later that he had made a reccomendation, but my case went to review.  Just as I began to relax...  However, the review was quick and I was approved and it's been fairly simple since then.  I do know without a doubt, that had I not been in contact with the person reviewing my case I would have been one of the many who was denied and had to fight for years to get approved, or spent money that I wouldn't have for the services of an attorney.  Nobody at Social Security was looking out for me (they lost my records and never read my application).  I consider myself lucky that I did not have to fight for what I was indeed entitled to receive.  I'd give it back in a heartbeat to feel good and make money on my own, of course!  However, that's not reality right now and I've accepted that.  I hope that this info will help anybody else who will have to apply for Social Security.  It's definitely a fight, and to begin with the applying person is at a disadvantage, but you can do many things to help yourself out.  I believe that finding out where your illness fits into their list of qualifying conditions is the best place to start!  Best of luck to everybody applying.  Don't give up and stay very involved in your case.  Be your best advocate!!!
Joann]]></description>
      <category>Guestbook</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/2/2616/3530.html#msg-3530</guid>
      <pubDate>Fri, 07 Mar 2008 14:02:35 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: Hyper IgE Syndrome (HIES) (Job Syndrome)</title>
      <link>http://www.ipopi.org/forum/read/1/3430/3529.html#msg-3529</link>
      <author>Alice Rowell</author>
      <description><![CDATA[Yes we had to do that too with Sam for some time at bed time, it's called wet-wrapping. After washing and applying the steroid potions, he'd be absolutely slathered with Diprobase moisturiser and then we'd put him into damp tubi-grip, different sizes for arms, legs and body. Didn't think of using damp pj's - good idea. 

Sam's skin has been relatively problem free for the past 18mths, but just lately things are starting to flare up again and he's getting more and more infected excema. Yesterday we requested to see a Dermatologist as a matter of urgency, one who's reasonably clued up on skin infections and excema with Job's Syndrome, expect they're rather thin on the ground.

June 25th is an awfully long to wait! Maybe you can get your son on a cancellation list, and see the Doc at short notice?

Ax :)]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3430/3529.html#msg-3529</guid>
      <pubDate>Wed, 05 Mar 2008 21:04:24 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: Hyper IgE Syndrome (HIES) (Job Syndrome)</title>
      <link>http://www.ipopi.org/forum/read/1/3430/3528.html#msg-3528</link>
      <author>lmounayar@yahoo.com</author>
      <description><![CDATA[The Immunologist did change his meds to some other creams and told us to put wet pj's on him and a dry ones on top of them . We are getting a second opinion at Duke , hopefully we can get him in sooner than the apt I setup Mon. , The Allergist left a message for the Dr so hopefully the Allergist can get him in sooner than I did. June 25th. 

Lisa]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3430/3528.html#msg-3528</guid>
      <pubDate>Wed, 05 Mar 2008 20:13:59 +0000</pubDate>
    </item>
    <item>
      <title>[General Discussion] Re: Any ideas on how to help?? Spouse of CVID</title>
      <link>http://www.ipopi.org/forum/read/1/3408/3527.html#msg-3527</link>
      <author>Simon</author>
      <description><![CDATA[Hi,my wife Vicky and i have been together since 2001, have a 4 year old daughter and have been married since June 06 and Vicky has been diagnosed with CVID since April/May 07. This is all new to us so its confusing, hard and emotionally stressfull for both of us. We have actually been separated for the last 3 weeks. It all happened spontaneously and its not a mutual agreement! She was really down for a day or so and then said she needed to find herself and wanted me to move out.. 
 I dont know wether its the reality of being diagnosed, the unknown of the condition itself, or side effects of the treatment or one of so many other possibilities. She has mentioned feeling like this before, not knowing who is or where shes going. I have always tried my hardest to support her through this but find it hard to not react to her mood towards me. I now have to step back and let her find what she wants but its so hard when you dont think its the right decision. I will still be there for our daughter and for Vicky, but find it so hard to change my role - i was her rock and primary carer, there thru thick n thin to someone she gets angry towards for no reason.
 Sorry got a bit emotional back there, doubt it will help, but theres always someone worse off when u think ur the unluckiest person in the world]]></description>
      <category>General Discussion</category>
      <guid isPermaLink="true">http://www.ipopi.org/forum/read/1/3408/3527.html#msg-3527</guid>
      <pubDate>Wed, 05 Mar 2008 20:05:19 +0000</pubDate>
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