Gamma Globulin Follow up

Discussion in 'Fibromyalgia Main Forum' started by karenwebber, Jul 17, 2003.

  1. karenwebber

    karenwebber New Member


    I wanted to first thank everyone who wrote me and shared the experience they had or are having with Gamma Globulin. Thank you so very much.

    I have decided to try it. My dr. said 10grams every three weeks by IV.

    My remaining questions are:

    1) What diagnosis have most of you used to get Gamma Globulin IV's covered by insurance? And, did your dr. need to write a letter for it or did you need to send it tests showing you needed it? There is no way I could get Gamma if it's not covered so I am so nervous as to what to use. Have any of you used Chronic Sinusitis/Rhinitis? I have that. I have Aspergillus infection as well. I also have CFS. My dr. and I decided that there is way we will do immune testing because we know that my immune system is severely low...and plus b/c my immune system is in such bad shape the tests are never accurate anyway.

    2) What brand/Manufacturer is everyone using? So far, I have heard of Bayer brand, I think it's called Gamimune and then there's the Baxter brand that I think is called Gammagard. I hear it really makes a difference as to what you use.
    thank you all so much for your help, Karen
  2. Hikagranma

    Hikagranma New Member

    I had no problen getting it taken care of by Medicare - but he constantly has to write them - telling them that i really need it. My doctor is a hemotoligest.

    I have the the autoimune problem - and all years since 1949. He said this all stems from a bout w/ infectious hepatitis in 1949 - WHEN i WAS 26!!YRS.

    I had 2 symptom free years - those were the 2 years after our daughter was born in June of 1956. The fall of 1958 is when I really started having my 'winter problems'. It developed into a year long problem about 1980.

    I do not have fibro but I do have CFIDS

    My main problems were chronic sinusitis - caused by staph infections.

    When I started the IVs in 1989 - I didn't know all that has been stated in the following posts to this thread, and I was not on the internet. I am glad that I didn't know that - or maybe I wouldn't gone for it.


    Hikagranma [Marian][This Message was Edited on 07/18/2003]
  3. beckster

    beckster New Member

    tell me what kinds of doctors are treating you with the
    gammaglobulin? Infectious disease doctors or immune specialists of some kind. What is the basic test?

    [This Message was Edited on 07/17/2003]
  4. GeneticDefect

    GeneticDefect New Member

    I need gamma globulins...just found out this Tuesday. The doc said he'd have to fight the insurance company. My pneumococcal serotype 12 came back low, IgM low, IgG4 low.

    Yep chronic sinusitis/rhinitis.

    I will deny gamma treatment (for now) 'cause my doc said you are getting plasma from 60,000 and their sexual histories. The choice is yours.

    I do beleive that this primary immune deficency is primary and CFIDS is secondary.

    There are a few on this board with the same problems. What test have been done? (I'm curious) Have you check out websites relating to PID? (Primary immune deficiency)

    Good luck
    [This Message was Edited on 07/17/2003]
    [This Message was Edited on 07/17/2003]
  5. karenwebber

    karenwebber New Member

    Hi, I am seeing a regular dr. although he specializes in CFIDS. I am not sure what the basic tests are to get done for Gamma, I am in the middle of trying to find out myself. I am hoping someone will post about them. I myself, have CFIDS, chronic Sinusitis, Chronic Asperigllus poisoning...also have viruses, etc. Karen
  6. karenwebber

    karenwebber New Member

    Hello Karen,

    I will be taking the Gamma Globulin for chronic sinusitis/Rhinitis as well. Also have CFIDS. I have Aspergillus poisoning and most of it is in my sinuses. My dr. thinks I also have staph in my sinuses. Testing will tell.

    You really scared me and put it into perspective when you mentioned the 60,000. You really have a good point. It's a scary thought but I have been disabled for over 15 years and if this will help me with my energy or with anything I think I should try it. I am kind of trying to talk myself into trying it I guess. I feel like I have run out of options. I keep getting infection after infection and antibiotics and antifungals don't do a thing for me, no matter how strong of a dose I take.

    What do you think you will do now that you made up your mind not to try Gamma? I have not checked out a Primary Immune Deficiency website. I will tonight. Thanks again, Karen
  7. dd

    dd New Member

    I thought that I posted to you about the IVIG but I don't see it so I will post again.

    I just had my 1st IVIG last Friday and it went pretty well except for a headache for about 3 days...but I will take the headaches for a couple of days if it means that I will feel better in the long run.

    I was dx'd about a month ago with a PID...specifically total IgG deficiency and also subsclasses 1 and 3 of the IgG. I believe my CFS is directly related to my immune deficiency. I have chronic sunusitis and bronchitis...have had sinus surgery too.

    Have you had you immunoglobulins checked to see where you are low? If you haven't, you really need to before you start the IVIG so they can determine how much you need to get your levels up into the normal range. After your 1st treatment you need to get your levels checked again to determine how quickly your body uses up the serum. Actually the protocol is to be checked 2 weeks after the 1st treatment and then 2 weeks later to see how much the levels have fallen. Everyone's system is different and uses the serum up at different rates. I was started on 50 grams for my 1st treatment because I was very low.

    I received the Gammagard and did well on it. As far as insurance goes, as long as your dr says you need it, it should be covered. The people at the IDF (Immune Deficiency Foundation) will help you if your insurance company gives you any hassles. They have been a big help for me. You can call them and get literature to read...they have so many resourses for people with PID's.

    If you have any questions please ask. I am going on vacation tomorrow for a week but will check back later to see if you have posted yet.

    Good luck and let us know how you are doing. I already have noticed increased energy from 1 treatment.


  8. GeneticDefect

    GeneticDefect New Member

    Hi Deb & Karen
    Deb: I did see your post thanks. Have a good vacation. I need your e-mail address. Give it to Carol in Nashville and she can send it to me.

    Karen: I told my doctor "I'm refusing treatment right now 'cause I've had a few good weeks in a row. Now if I felt like crap I would be begging you for the gamma." I dont want to persuade you against the gamma, I know how rotten you must feel and dont blame you for receiving the treatment.

    On the PID website they have a section "experience with gamma treatment" check it out.

    ttyl Karen
  9. karenwebber

    karenwebber New Member

    Hello Karen,

    I can not seem to find the PID website that has a link "experience with Gamma treatments:. Can you please tell me which one it is?

    Also, would it okay if you emailed me a list of the tests they do to look for PID? In the mean time, I will do some more searches to see if some of the PID website give a list of tests that should be done to determine if you have PID. Thank you, Karen
  10. dd

    dd New Member

    Do a search on Immune Deficiency Foundation. You will be able to find it that way.

    I have done several posts about PID's and IVIG treatment...including what tests to ask for. Click on my name and my posts will come up...

    Please let me know if I can be of any help to you.


  11. GeneticDefect

    GeneticDefect New Member

    1) Pneumococcus Ab serotype 12
    2) H. influenzae type B ELISA
    3) IgG subclass
    4) Quantitative IgM, IgA, IgM

    I was Dx with CFIDS/FM from a rheumatologist. She Dx'd me with CFIDS without evaluating my immune system. Go figure. how many people are running around thinking they have CFIDS when they actually have an immune deficiency.

    I don't have your e-mail address.

    There are more tests that I'd like to get done but my doctors dont find it necessary. For example: CMV & EBV viral test. PCR for mycoplasma inections. I wish they would dig a little deeper into my endocrine system.
  12. karenwebber

    karenwebber New Member

    Thank you Debbie. I did what you said and you are did post about which tests to get done. Thank you for suggesting I look there. I am new to this board and just catching on. I saw that you mentioned to get:

    Quantatative Immunoglobulin Levels
    IgG, IgA, IgM, IgD, IgE

    Also, to get the subclasses done as well.

    So when I go in next week I will ask for these tests. I think my dr. uses Immuosciences Lab for these types of tests but I assume you could any LabCorp place too. Thank you again for your help. Karen
  13. karenwebber

    karenwebber New Member

    Thank you for posting the tests to get done for PID diagnosis. I am going in next week and will get them done. Debbie did not mention the H. Influenzae one and the Pneumococcus one but I will ask my dr. about them anyway. Not sure what they are. My dr. uses Immunosciences Lab so I think they can do all of these tests there.

    Thanks again for all of your guidance. This has been a horrible journey as I am sure you can all relate. Now I am nervous to get the testing though because I want it to be positive so badly. I am sick of having CFS diagnosis because it is so misunderstood. Thanks again, Karen
  14. hollie9

    hollie9 New Member

    I've been infusing 10 grams of PolyGam SD every 2 weeks at my doctor's office for at least 4 years. It makes me feel better, not cured, but I can tell if I haven't kept up my schedule with it.

    About the blood pool scare: Check out how immunoglobulin is made. First, it is the froth off the blood pool, not the actual blood. There is at least one but usually two cleansings of the immunoglobulin for everything you can think of, if I remember correctly it's put under extreme heat or pressure or something drastic that virtually kills anything that could be transmittable. My doctor says he has seen it made and it is impossible to catch anything from it.

    I have had no tests and can't figure out why you guys want to have them. I doubt a test exists for this, it's almost the same as a test for CFIDS.

    You'all know how this system works: If it makes you feel better do it, don't hang around waiting for a doctor to suggest it and if they have, then jump on it. This stuff is hard to get and sometimes the supply dries up for years. I'm surprised you can get it now since the war is still on.

    My doctor's billing person knows all the right codes to get insurance to pay and my doctor is so used to signing the letters of medical necessity I have them on file to fax to insurance every time they inquire. I'm sure your doctor knows all this too.

    Good luck, it doesn't help everybody, but it sure does me.

  15. JaciBart

    JaciBart Member

    Madwolf, if you are reading this I would be happy to be your guinea pig patient to try this out on.

    Do you guys have to go to a clinic for this?? HOw long does it take? Is it just an iv drip???

    Keep the info coming on this, this is great news for those of us willing to try anything.

  16. dd

    dd New Member

    Hi Hollie,

    There are tests to see where you are deficient in your immune system. Immunoglobulins are what the body depends on to fight infections, bacterias and viruses. If you are low in any of the immunoglobulins it can affect your health greatly. It is a simple blood test to determine any deficiencies.

    Hi Jaci,

    I hope you have this testing done. I feel that many people that have been dx'd with CFS and/or FM have an underlying primary immune deficiency that should be checked out. I have only had one treatment so far and have noticed increased energy all has only been one week since the infusion. The only side effect that I had after was a bad headache for a couple of days...well wortht the trade off for better health.

    Good luck to the both of you. I will be on vacation for a week so won't be near a computer. Please check out the site for the Immune Deficiency Foundation...IDF...there is a wealth of information there and you can also call them to ask questions.


  17. karenwebber

    karenwebber New Member

    Hi Hollie,

    Thanks for posting about your experience. The reason I am going to get the tests done is because I think it might be the only way to get insurance to pay for my Gamma Globulin. If I can get a Primary Immune Deficiency diagnosis then I have more of a chance of Cigna paying for my Gamma Globulin. I have tested positive for many viruses, chronic sinusitis/Rhinitis, Aspergillus poisoning, and many more things but nothing that we think will help get my Gamma Globulin covered. I could be wrong about this though.

    This is what I have been trying to find out....what has everyone been using as a diagnosis to get the Gamma covered? Hollie, what did you use? Do you remember any of the codes your doctor used so that maybe I can try them?

    Also, what symptoms have you noticed that the Gamma has helped you most with? Thanks again, Karen
  18. hollie9

    hollie9 New Member


    I've looked at my Blue Cross communications and I don't have the codes anywhere here. I know they put on many, many codes using the "kitchen sink" theory. Surely your doctor or his billing person know how to handle this. I have never had to take a test for immunoglobulin.

    Also, when I first started gamma I got tired and somewhat headachy for the first day or so. I don't get that way anymore if I keep a regular schedule. They say gamma doesn't kick in until the third day after infustion.

    I have a drip infusion on the doctors sofa. I have them insert the needle into a good vein on my foot. Otherwise you may get bruising around the insertion point and people don't see it much on the foot. My doctor, and probably all doctors, don't want to use the crucial veins like your inner elbow or wrist because they want to save those veins for an emergency. Waiting for the drip to complete takes about 45 minutes, waiting for the doctor to get around to it? minutes.

    Here is how my letter of medical necessity reads:

    (On Doctors Letterhead which was actually made by me, he hates to take time for this)

    Prescribing physician is _____________________________

    Patient receives Polygam SD infusions in my office, usually every other week. She has received infustions since she became my patient in February 1997.
    Notes: She tolerates Polygam SD very well. No other therapy has made this patient as well as the Polygam infusions. This therapy dramatically increases her alertness, reduces neurological symptoms and has had no adverse reactions.

    Patient is diagnosed with Myalgic Encephalomelitis, Chronic Neurondocrine Immune Disfunction Syndrome (at present this is being called Chronic Fatigue Syndrome although a name change is pending).

    Other medications the patient receives for this disorder: Klonopin which decreases "brain fog", low doses of Doxepin, a mild antidepressant primarily to promote good phase II sleep. Restoril for sleep also. She also receives injectible B-12, Cyanocobalamin which calms the nervous system.

    Treatments that were not effective with this patient are Florinef, Pentoxifylline and Prozac which caused nervousness and lack of sleep.

    Essentially Polygam SD allows her to live a nearly normal life. Without it, she would spend much more time unable to get out of bed.

    Dr. __________________________

    I hope this helps and I cant remember any other questions you had. I don't know how old you are but my friend with Medicare has her gamma infusions done at the hospital, no problem with Medicare paying.

    Good luck, Hollie

  19. hollie9

    hollie9 New Member

    I'm obviously deficient in immunoglobulins, that's why gamma makes me feel better. I have never needed a test to get insurance to pay and I've had 3 insurers.

    I take many, many blood tests. I doubt you have taken as many as I have. Next week I'm going to have a bunch of new tests taken, at my request. I was quite interested in the article by Patti Schmidt in this site's publications, where she had some newly released tests for Lyme disease. After 20 years diagnosed as CFS, these new tests showed she had Lyme disease. She went through all the antiviral and other Lyme therapies and now she feels NORMAL!

    [This Message was Edited on 07/19/2003]
    [This Message was Edited on 07/19/2003]
  20. karenwebber

    karenwebber New Member

    Hi Hollie,

    Thank you for writing up that letter. I was thinking about asking my dr. to do the "everything in the kitchen sink" thing too for my insurance. I think he will do that. The one thing with the letter you posted is that it is bascially telling company that you are already on it, not asking them for permission to be on it, which is what I would have to do with my Cigna because I have never been on Gamma yet.

    Also, I am very interested in reading the Patti Schmidt publication you mentioned on Lyme and Viruses. I did a search on this site for Patti Schmidt and nothing came up about new tests for Lyme and/or viruses with Lyme. Can you please point me in the right direction? Thank you, Karen