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Old 09-30-2010, 06:01 PM   #1
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CMG3881 HB User
Cvid

I was diagnosed with CVID over 19 years ago. I was diagnosed by Johns Hopkins University when I was 10 years old. My immune system at the point was not existent and was receiving the IVIG treatments for years until they changed the formula and had a allergic reaction. I haven't received the treatments in years but I have noticed that I am getting sick more frequently and I have been diagnosed with more allergies than my allergist has ever seen anyone to have. Especially to the amounts of food allergies that I have. I have been wanting to try the IVIG treatments again but I can't find a good immunologist in this area and I can't afford them because I have no health insurance. Very upsetting to me indeed. Is there anything that I can try to help keep me a bit healthier without forking out a lot of money?
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Charlotte G.
Mommy To Olivia Renee 4/26/04

 
Old 10-01-2010, 05:21 AM   #2
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kelli1b HB Userkelli1b HB User
Re: Cvid

Quote:
Originally Posted by CMG3881 View Post
I was diagnosed with CVID over 19 years ago. I was diagnosed by Johns Hopkins University when I was 10 years old. My immune system at the point was not existent and was receiving the IVIG treatments for years until they changed the formula and had a allergic reaction. I haven't received the treatments in years but I have noticed that I am getting sick more frequently and I have been diagnosed with more allergies than my allergist has ever seen anyone to have. Especially to the amounts of food allergies that I have. I have been wanting to try the IVIG treatments again but I can't find a good immunologist in this area and I can't afford them because I have no health insurance. Very upsetting to me indeed. Is there anything that I can try to help keep me a bit healthier without forking out a lot of money?
If you have cvid, nothing can help you except for IVIG that I am aware of. Nothing will "boost" an immune system that isn't there. Have you tried medi-cal or medi-caid? You probably have an IgA antibody and were given the wrong IgG product. A simple blood test can tell you that and if so, there are products with NO IgA. Good luck.

 
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Old 10-01-2010, 10:35 AM   #3
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Oleander53 HB UserOleander53 HB UserOleander53 HB User
Re: Cvid

Hello, Sorry about how you are feeling.

I developed some severe food allergies over the last 2 years. I mean I had 2 bouts of Anaphylaxis that paramedics had to be called. Itching, hives, fullness in ears, shortness of breath, rapid heart beat and so on. I had to see an Immunologist and carry an epipen and all of that. I am in my 50's ??????????

I had a positive test called Anti IgE Receptor AB test. In a nutshell my body's receptors are attacking themselves.

I am on Zyrtec and Zantac daily which are Histamine blockers and can be purchased over the counter. It has settled my system down and I have not had an allergic in over 2 months. Wonderful !! I also had skin testing and then RAST blood testing. I am showing highly allergic to Beef...so I am avoiding beef.

I am being worked up for Lupus and hopefully that is not the case.

Hope that helps........ Oleander

 
Old 10-01-2010, 12:19 PM   #4
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kelli1b HB Userkelli1b HB User
Re: Cvid

Quote:
Originally Posted by Oleander53 View Post
Hello, Sorry about how you are feeling.

I developed some severe food allergies over the last 2 years. I mean I had 2 bouts of Anaphylaxis that paramedics had to be called. Itching, hives, fullness in ears, shortness of breath, rapid heart beat and so on. I had to see an Immunologist and carry an epipen and all of that. I am in my 50's ??????????

I had a positive test called Anti IgE Receptor AB test. In a nutshell my body's receptors are attacking themselves.

I am on Zyrtec and Zantac daily which are Histamine blockers and can be purchased over the counter. It has settled my system down and I have not had an allergic in over 2 months. Wonderful !! I also had skin testing and then RAST blood testing. I am showing highly allergic to Beef...so I am avoiding beef.

I am being worked up for Lupus and hopefully that is not the case.

Hope that helps........ Oleander
Oleander - I was told we can't get diagnosed by antibody tests such as lupus, Valley Fever, Tuburculosis, etc because we don't make antibodies. I truly believe I have Lupus and can't get a 2nd opinion, shoot I can't even get anyone to see me for that matter.

 
Old 10-01-2010, 12:32 PM   #5
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Oleander53 HB UserOleander53 HB UserOleander53 HB User
Re: Cvid

Yes I was treated as a teenager for low immune system with Gammagobulin shots.

I think this has a huge impact on tests but many Doctors are not educated on it. I think when I show a elevated anything it means it is really high. I am what you call a non responder to vaccines also. Hep B series twice and my titre will not rise, small pox given 6 times as a child and no scar or no reaction at all?????? I stay clear of vaccines.


I am going to see what my new Rheumatologist has to say...I am on his waiting list to be seen. Referred there by my Immunologist.

Good luck and I will let you know what I find out......Oleander

 
Old 10-01-2010, 07:39 PM   #6
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Join Date: Mar 2009
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kelli1b HB Userkelli1b HB User
Re: Cvid

Quote:
Originally Posted by Oleander53 View Post
Yes I was treated as a teenager for low immune system with Gammagobulin shots.

I think this has a huge impact on tests but many Doctors are not educated on it. I think when I show a elevated anything it means it is really high. I am what you call a non responder to vaccines also. Hep B series twice and my titre will not rise, small pox given 6 times as a child and no scar or no reaction at all?????? I stay clear of vaccines.


I am going to see what my new Rheumatologist has to say...I am on his waiting list to be seen. Referred there by my Immunologist.

Good luck and I will let you know what I find out......Oleander
Oh gosh yes please! I wanted a second opinion, with all that I have going on I think its lupus and not fibro and my rheumy thinks I can spontaneously make antibodies now

 
Old 10-01-2010, 09:20 PM   #7
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Oleander53 HB UserOleander53 HB UserOleander53 HB User
Re: Cvid

Personally, I hate to be negative but I think we will run into a brick wall.

I am already so frustrated with the Doctors I am running into. I keep hearing an negative ANA means you are fine.....HELLO !!!! ?

I will get some answers, I luckily have good insurance and I will keep going until I get an answer and find someone with a brain.

I have been sick since 9/13, achy, short of breath, extreme fatigue, my fever is gone finally, chest xray neg, ESR and CPR sky high, the Doctors in the ER said it was a lupus flare, then the immunologist said it was a Lupus Flare but when the ANA came back neg suddenly everyone changed their minds.

I feel like crap. I would be willing to bet if I took a prednisone pill I would feel better. I have some for my allergies. I mean I have been sick for 18 days now.

But I am going to get this figured out..........I will let you know.

Also if you need IGIV call the Manufacturers and ask them for help. CSL , Talecris, Grifol's, or Baxter..... they have programs to help people who do not have insurance. Hope that helps you....

Oleander

 
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