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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. S

    Immune levels

    Minkeygirl - did you ever do the Pneumovax challenge? Did you pass or fail? Are you still posting here?
  2. S

    Total IGE and IVIG/SCIG ???

    Wow - you are absolutely correct. I just checked - yes - should be IgG, IgM, IgE etc. All these years..... - thanks for pointing that out!!! Gamma - as one of my doctors called it. I guess short for Gamma globulin replacement IVIG/SCIG.
  3. S

    Total IGE and IVIG/SCIG ???

    Nobody wants to take a stab at this one? @Jonathan Edwards ??? I understand that my body can only make a finite amount of IGG, IGM and IGA antibodies. (Immune deficiency - CVID). Not sure about IGE antibodies - as they seem to be a bit different class of immunoglobulins. Assuming I don't...
  4. S

    Subcutaneous immunoglobulin therapy

    I can't remember the blood markers - was researching for a friend who has this. You might try a google search - I think that's what I did. IIRC to get IVIG for Parvo one has to show they also have this certain kind of anemia.
  5. S

    Total IGE and IVIG/SCIG ???

    Trying to figure something out - as I am becoming more allergic/reactive. Wondering if it has something to do with IGE and Gamma. Note my total IGE levels (Ref. range 0-100) Oct 2009 - 132 - No Dx - Never had infused Gamma July 2010 - 187 - Testing - Still no Gamma - IGG 570's Dec 2011 - 383...
  6. S

    Gamma globulin

    @maryb SubQ or IM? How many cc's? I think I read mixing the Mag with something like Taurine lessens the sting?
  7. S

    Gamma globulin

    @minimus Reading this with interest. Glad your first IVIG went as well as it did - and that you were approved for it! Your Mag injections - IM or SubQ? Dose? Anything mixed with it to help with the reported sting? FWIW I just finished infusing a gram of Mag. IV - done by myself...
  8. S

    What are your experiences with HBOT?

    I am researching this. Mild HBOT vs "regular" HBOT. My understanding is that one has to do the "dives" for several months to get benefits. Some folks purchase their own chambers and do daily dives. The home chambers are the "mild" lower pressure ones. Soft shell. I am seriously...
  9. S

    Subcutaneous immunoglobulin therapy

    Gamma for Parvo B19 - I think one requirement is some kind of anemia associated with PB19.
  10. S

    Rocephin shots

    Oops - brain fog much? Of course not 500cc. Yikes. Anyway - @Hip with your one injection - did you note tissue irritation? FWIW I would be using Lidocaine to mix. But something about the Rocephin - wondering what it could do to fatty tissue vs muscle? Oh - perhaps you did...
  11. S

    Rocephin shots

    Hi - bumping up this thread as I have started back on Rocephin. My muscles are so sore from Lyme and Co's that I dread the thought of any IM injection - especially Rocephin. So am considering SubQ. @Hip - you did an injection SubQ in your belly? And? Did you do it more than...
  12. S

    Colostrum

    Researching - found this - listing antibodies - many of which are found in IVIG. http://www.icnr.org/articles/infanthealth.html Is it possible these antibodies really are in the colostrum and our bodies can use them? If I stop IVIG/SCIG - wonder if colostrum could be of help - better than...
  13. S

    Possibly Cutting Gamma Globulin Expense

    Interesting. I have done research in IMIG - wanting to try it. Even though the shots supposedly really hurt. I read that many years ago folks were getting a different brand than what is available now. They were getting Baygam? or such. One gal said they really helped her not get...
  14. S

    Gamma globulin

    Justy - yeah - I meant to say we just need to hang in there. One of the points of my a.m. post was that if we are reacting to the antibodies - then we may have more than three weeks to deal with that. Is it an antibody meets antigen war? Somehow the sicker we are with some kind of...
  15. S

    Gamma globulin

    Ugh - I want to stop my Gamunex. Of course it is difficult to tell the difference between symptoms of Lyme and Bart and side effects from Gamma. I am not taking antibiotics. Sometimes I feel better on Abx - but lately worse on them. Seems I feel worse on everything I try past...
  16. S

    Possibly Cutting Gamma Globulin Expense

    Good idea re: travel vaccination. But last I researched this - the price of IMIG was quite high. Question: did the shots make you extremely ill as a side effect - or you were extremely ill anyway at the time?
  17. S

    Gamma globulin

    I infuse tops of my thighs. Sometimes folks have to change brands. I started on Gammagard and switched to Gamunex. I have not tried other brands - might need to try a different one. For those that have been on GG - and have had side effects - went off of it - did you eventually get...
  18. S

    Gamma globulin

    @justy - sorry you are feeling so bad - but glad you posted an update. I also have Lyme and Bart. I also feel dreadful and don't know from what. You can attribute your dreadful feeling to the Gamma? As opposed to the dreadful feeling from CFS, Lyme and Bart? I have tried a...
  19. S

    Immunoglobulins and Immunologists on the NHS UK

    I think finding a "clinical" immunologist might be difficult almost anywhere. Vs an immunologist (not an allergist) I agree to have your subclasses checked. Also maybe do a vaccine challenge. (Pneumovax etc). If your body does not respond well enough then perhaps you do have an immune...
  20. S

    Cost of IVIG

    Justy - thanks - that is interesting. My doses are higher so I use the entire vials - but have always wondered about this with the Gamma and other drugs. I inject another drug that is drawn up in the doctor's office - into syringes - that are good for months if kept in the fridge. That...
  21. S

    Cost of IVIG

    -------------- I have wanted to respond to this. I have always understood that the vials are single use only - not multi dose vials.. Meaning once you enter the vial the contents must be infused/injected within a few hours. Don't know if things are different in Europe or with different...
  22. S

    Heart palpitations.... Is there anything that helps??

    Did anyone mention Magnesium? Perhaps Mag. deficiency?
  23. S

    Anyone know where to get IMIG online or in UK?

    500 mg weekly? Wow. I will try to correctly type the URL I found - old thread from here - worth reading: http://phoenixrising.me/conferences-2/the-2007-iacfsme-conference-part-iv-the-clinical-trials-by-cort-johnson Scroll down to bottom - last pink box - Dr. Park. Tim - I sent you a PM -...
  24. S

    Anyone know where to get IMIG online or in UK?

    Researching - found an old topic from this site - interesting: http://phoenixrising.me/conferences-2/the-2007-iacfsme-conferences-part-iv-the-clinical-trials-by-cort-johnson Scroll down to the section about Dr. Tae Park - IV Gamma. FWIW I have heard people say they felt better after small...
  25. S

    Anyone know where to get IMIG online or in UK?

    Tim - do you have a doctor that will prescribe the Gamma? Have you researched the various brands and their costs? In the US IMIG per cc or gram - if you can even get it - is much more expensive than the brands that are used SubQ. So you might want to compare prices IMIG vs SCIG -...
  26. S

    Anyone know where to get IMIG online or in UK?

    Here is a link to the abbreviated version: http://www.ncbi.nlm.nih.gov/pubmed/11982967 Looks like the whole study - including tables showing the antibodies and amounts in batches is availabe online only to subscribers. (Wiley online library). But again - I downloaded it years ago when the...
  27. S

    Anyone know where to get IMIG online or in UK?

    FWIW - there are Lyme (Bb) antibodies in IVIG. Of course also antibodies to various viruses. I am thinking these antibodies "neutralize" the antigens in our bodies - to some degree. I downloaded a study on this from years ago. I am a computer dumb dumb and would not know how to post it...
  28. S

    New YouTube Video - Gamma Daily Push

    @garcia - thanks for uploading the video. @justy - right - no pump. The vid is great - but it is all easier than even that makes it look. FWIW you probably could not get the tubing the gal uses anyway. The RMS and others like it are primarily used for those with immune deficiencies - infusing...
  29. S

    New YouTube Video - Gamma Daily Push

    @justy @Daffodil Edit: Youtube link not working so: Google: Youtube - "My daily infusion process" by Shamandagans - 5/15/15 This is a great video. I do mine pretty much the same way. Though.... I infuse thighs i/o belly. I do not unwrap the Tegaderm cover until I am ready to use it...
  30. S

    Recent KDM appointment

    Daf - quick reply. Were any of your antibody tests IGA? They would probably be accurate. Did you bring any Gamma home with you?