CFIDS underlying issue

Discussion in 'Fibromyalgia Main Forum' started by GeneticDefect, Jul 15, 2003.

  1. GeneticDefect

    GeneticDefect New Member

    Today my immunologist announced that I should start gammaglobulins via IV every 3-4 weeks....which means I have a primary immune deficiency. I will deny any such treatment cause they use a pool of blood donated from 60,000
    people including their sexual partners.

    In my case I feel that my CFIDS is part of the immune deficiency and believe that each case of CFIDS is different and it is a matter of finding the etiology of CFIDS.
  2. dd

    dd New Member

    I know how concerned you are about the amount of donors for the infusions. I was too when I was first told that I needed the IVIG. As a matter of fact that was my biggest concern.

    I did a lot of research and spoke to my dr, nurses, pharmacies that supply the IVIG and I also called the IDF and spoke to someone there. I spoke to all these people about the safety concerns that I had regarding the IVIG. These people all calmed my nerves about receiving the donated serum. The IV immunoglobulin comes from 'professional' donors that are specifically used for the IVIG. They use these same donors time after time because they go thru extensive testing before they are even approved to give this type of a donation. After these donors have done their part, the blood then goes thru a purification process that is very detailed. Each bag of serum is checked and rechecked for any viruses, bacterias and diseases...this is a 6 month process for each bag of serum to ensure the safety of it.

    I just went thru my 1st infusion on Friday and I can already feel a difference in my energy level. I had a really bad headache for a few days but I will gladly go thru that each month if my health continues to improve.

    I know this is a very personal decision to make and only you can make it. I've been where you are at emotionally only a few weeks ago so I do understand. I would strongly suggest that you contact a couple of the pharmacies that supply the serum and talk to them about your concerns. Call the IDF and talk to them also. They have been advocates for people with PID's for over 20 years and know every feeling that you are having right now. They even have Immunologists that you can speak to with any fears that you have. They will even contact your Immunologist if you want them to.

    If you have any questions that you want to ask me let me know or email me. I will be happy to talk to you.

    Peace,

    Debbie
  3. GeneticDefect

    GeneticDefect New Member

    Hi Deb
    I talked to Carol and knew you had your IVIG last week. I was thinking about you over the weekend and was hoping you weren't suffering too much.

    I remember your posting and concern about IVIG. At that time I was trying to get a darn Dx. Today reality hit me and i'm hesitate about IVIG. However, your words and research put my mind at ease.

    I don't have your e-mail address. Give it to Carol in Nashville.

    thanks again
    Karen
  4. dd

    dd New Member

    I did another post to you but it didn't go thru for some reason. It was kind of long so I will just give you my email so I don't have to go thru the post again.

    Let me know when you have it so I can remove it.

    Peace,

    Debbie
    [This Message was Edited on 07/18/2003]