Hello dd ! The IVIG Pro. here as promised

Discussion in 'Fibromyalgia Main Forum' started by Vette, Jun 23, 2003.

  1. Vette

    Vette New Member

    dd, Hi I'm Vette. If you search under toxic mold on this site you will see several entries from me. I don't get on here often but Dee & Schnoodle know how to contact me also.
    I have had 32 treatments with IVIG at home with a Home Health R.N. staying here with me through the whole process which usually takes five to six hours from start to finish each time you get it. I'm a Nurse and don't know your background but sometimes I get carried away and use medical lingo. One of my co-workers who also had a few of the same symptoms as the rest of us who worked in the moldy office building went to the same specialist as the rest of us (about forty people) and she was ordered IVIG to be given in the Hospital here (we are five hours from the Doctor) each week for a time but told it was due ,simialar to yours, from a congenital immune disorder. My first reaction is; if her / your immune system is so poor. I have to hold back at times due to litigation from what I actually think and after thirteen Dr's in 3yrs. am note very trusting, But....in this case as the order for some of this group is short term that a differential diagnosis such as hers which the company insurance would pay for and they would not on the mold issue (I didn't have the company insur. I have my spouses) for the same treatment that money may be a big part. I am suspicious of much that is going on as this is so costly but I am
    Neurotic (anxiety dixorder), not Psychotic (Texas humor !).
    I did have ill affects and of course my anxiety increased even on my routine meds to make it worse. I too was concerned with so many donors in each 250cc bag of the IG that went in to me each week but in my case after seeing all of the other doctors to no avail ("see your Psych. Dr."), and my Psych. Doc. understanding mold illnesses saying it was the mold, not my mind, I saw no other choice. At about $ 7,500.00 per dose of IVIG (depending on your weight), if a Doc. was in with the infusion company (Big If), think of how wealthy he could be. Huh? Please,Please get a second opinion. Look back and see how often before FMS you had been ill in your life other than all of the regular things "normal" folks get. I'm concerned when you are told you will have to have this for "life". This was said as a possibility to me last year. I would drop a few symptoms after a few doses (ordered in series of 12 usually), then after a few months without it the symptoms would return. I can handle the pain. The main horrible symptom for me is the brain fog that keeps me from having my independance as 95% of the time I can't even trust myself to drive my own car as I may not think to look for traffic or think fast enough to do other things that could injure others or myself. I saw the distant Doc. along with some others from here in April and new nerve damage was reported to me, so more IVIG ordered. I thought it over for three weeks then called their office and gave in to it again not wanting to screw myself up but then that thought goes both ways. Will I really get worse and worse if I don't have 12 more after the last 32 or will I improve even without it, just with time. Your case is different. Though Mold illnesses go back to Leviticus 14,15, Doctors in our time are fresh in the field with only three M.D.'s in the U.S. I know of and only a few private labs doing the treating / testing for it, it's so hard to make a responsible or an educated decision for that matter to take the potion or not. I know I could give you much more info. Let me know what other questions you have and I will answer what I know and will tell you if I'm only giving an opinion out of experience. By the way, my husbands insurance is concerned also and have denied treatments this time though the Dr. / Infusion Co. are fighting it. I do pray.....did not really want to do this again anyway and am really hoping this is "Devine Intervention" and will be kicked back no matter what. Then I'll be sure who really made the final decision.
    No, I'm not a fruit cake, just a very honest, average woman who wants' her life back like everyone else here.

    Vette
  2. dd

    dd New Member

    Just wanted to let you know that I saw /read your post and appreciate it very much. I will have to write more later though as I have developed a migraine from reading and searching all day. I have to go lay down anf take a little break from all this.

    I will get back to you later though.

    Peace and Love,

    Debbie
  3. dd

    dd New Member

    I feel a bit better now that the headache has subsided a bit. Too much reading I guess.

    I do know what you mean about wanting your life back. I've been sick far too long and miss doing a lot of things with my children. Hopefully that will a change in the near future. God willing.

    I think that I have decided to go ahead and give this a shot. I am still going to have a 2nd opinion but am fairly certain that the outcome of the IgG levels will be the same no matter what dr I see.

    Did your IgG levels drop because of the toxic mold? Have they increased with your treatments? Have you shown significant improvement? Did you have side effects with only the first few treatments or with all of them?

    I am really interested in finding out more about the subQ treatments with this. From what I have read it is less risky and fewer side effects. Do you have any opinions on the subQ treatments?

    I have basically stopped driving also due to panic attacks and sinus problems that keep me constantly dizzy. Part of that is brain fog too. I used to be so independent...hopefully one day soon I will be again.

    Is there one lab that is better than another that you know of? I want to make sure I know which ones to stay clear of.

    The headache is coming back again. I do have more questions but will post another time. Thank you for sharing your thoughts and experiences. I do appreciate it more than you could know. This is so much information to digest in just a couple of days....

    Peace and Love,

    Debbie