STARTING NEW TREATMENT OF GAMMA GLOBULIN SHOTS I am about to start a new treatment of gamma globulin shots. my doctor's nurse says taking gamma-globulin is "like borrowing a healthy person's immune system." Here are two short articles on Phoenix Rising and Health Rising about gamma globulin therapy, in which you will see that a number of ME/CFS expert doctors use it or have used it, including Doctors Teitelbaum, Chia, Peterson, and De Meirlier: 1. http://phoenixrising.me/treating-cf...yalgia-infections-ivig-immunoglobulin-therapy 2. This Health Rising article has a few more details and more patient comments http://www.cortjohnson.org/treating...onic-fatigue-syndrome-mecfs-and-fibromyalgia/ This is a slide show from the lyme expert Dr. Burrascano. In his slide show he says IVIG (an IV of gamma globulin) is key to the recovery of long term lyme and ME/CFS http://www.lymepa.org/What_s_new__Slides_Sept_2008.pdf In short, folks with "our illnesses" (ME/CFS, Fibromyalgia, Lyme) who have been able to afford it have been doing IVIG (intravenous injections of gamma globulin) for a long time, But it was very expensive. I recall meeting someone years ago at a lyme meeting and she said she was a long term lyme patient who was now doing well due to IVIG. But I couldn't afford it at that time, as my insurance did not cover it. Well, apparently now it does! Plus, it is now easier to do gamma-globulin (gg) than it used to be. Now it is just a subcutaneous injection once a week that takes 1-2 hrs to do, as it is a slow subcutaneous "infusion" shots administered via a pump. But you no longer need to do an IV, so you do the infusion at home. Much easier for those who are homebound. Interestingly, Burrascano also says gg helps nerve damage. Important note for USA patients: Medicare now covers gamma-globulin shots if you have a deficient in your immune system, that is, if you have at least 2 "subclass deficiencies," which my doctor says I do have. He did a simple blood test to find out. With those two deficiencies, I have a diagnosis of "Common variable immunodeficiency" (CVID) (also known as "Acquired hypo-gamma-globulinemia") and thus I can now do the weekly subcutaneous gamma globulin infusions and get it covered. For me, the result of an immune system that is not working is *not* that I get every cold that comes around (I do not), but rather it is that I have active infections going on, such as EBV, Parvo virus, HHV-6, Mycoplasma, and others. My local doctor says it is a great sign that I did better *initially* with the antivirals we tried for me, but that the reason the antivirals did not continue to work for me, or work fully for me, was due to the fact that my immune system is deficient (i.e. has these above mentioned subclass deficiencies) and thus couldn't "back up" (my words, not his) the work of the antivirals. My doctor said that if I do gamma-globulin injections to address my immune system deficiency then the antivirals will likely work for me. Time will tell. SUBCLASS DEFICIENCIES Here are my lab test results that show that I have the two so-called "subclass deficiencies" (see where it says "Low" below), and it is these two subclass deficiencies allows my insurance, and also allows Medicare, to cover the subcutaneous gamma-globulin injections. TEST --> RESULT --> REFERENCE RANGE Immunoglobulin IGG: 920 (in range) (ref range 549-1584 mg/dL) Immunoglobulin IGA: 123 (in range) (ref range 61-348 mg/dL) Immunoglobulin IGM: 127 (in range) (ref range 23-259 mg/dL) Immunoglobulin IGE: 15 (in range) (ref range 0-158 IU/mL) IGG SUBCLASS 1: 417 (Low) (ref range 422-1292 mg/dL) IGG SUBCLASS 2: 441 (in range) (ref range 117-747 mg/dL) IGG SUBCLASS 3: 39 (Low) (ref range 41-129 mg/dL) IGG SUBCLASS 4: 14 (in range) (ref range 1-291 mg/dL) IGG Serum: 942 (in range) (ref range 700-1600 mg/dL) THIS IS THE BRAND I WILL USE http://www.gammagard.com/patients-and-families/ PHARMACY THAT SUPPLIES IT This is the pharmacy I am using http://www.accredo.com/ Accredo Customer Service number 24 hrs/day: 877-315-6140 (to get a live person, press 2, press 1, press 1) They have been very helpful. If you want gamma globulin, you may want to call them to see if they can work with you, too? WEEKLY INFUSION METHOD The method of administration of Gammagard (the brand I will use), and for most gamma globulin, is an infusion via a pump that takes 1-2 hrs. There are youtube videos of folks doing it. Here are some: Here is a doctor talking about the infusion ANOTHER APPROACH: DAILY SHOTS METHOD I have also been reading posts from a woman named SusanK on the "Lymenet" forum. (http://www.youtube.com/watch?v=u4mw5V-q_A4) She does not want to do the 1-2 hour infusion. She wants to do the a daily subcutaneous gg shot. She linked to some papers on why that technique/treatment could be better (see below). Also, the Phoenix Rising article I linked to above talks about ME/CFS doctors using this same approach, too, so apparently it is not so new. (Here is the article again: http://phoenixrising.me/treating-cf...yalgia-infections-ivig-immunoglobulin-therapy) I start the Gammagard next week. I am supposed to do the 1-2 hour infusion via pump, but, as just mentioned, the more I research I do, the more I see that the new "cutting edge" way to administer it is via these daily subcutaneous "pushes" (shots) of small amounts (takes <5 minutes), instead of via weekly pump infusion (takes 1-2 hours and is a much larger amount). The below articles say the efficacy is the same, and actually the daily "pushes" (subcutaneous shots) are better, as they offer a more steady result, with the patient experiencing less highs and lows during the week. This method is popular apparently in some parts of the world if one's doctor is "up to date" with all the new methods. It is considered "off-label," but still allowable. Here are published articles to support this approach. They were posted by that woman SusanK on the Lymenet forum. 1) Article from 2010: http://www.ncbi.nlm.nih.gov/pubmed/20082124 2) Follow-up article from 2012: https://cis.confex.com/cis/2012/webprogram/Paper1818.html 3) See section titled "Frequency of Treatment": http://www.nufactor.com/FA-IG_003.aspx Will keep you all posted. * * * as we all know, we need 2 of our immune IgG subclasses to be low in order to qualify for insurance to cover the gamma globulin. but two things to consider: 1) your IgG subclass numbers can change over time. so if you do not get the test results you want/need the first time, that could change later, over time (how much time, I have no idea). 2) i wonder if your results are not low with one lab, maybe it is still worth trying with another lab -- i.e. if you are from the U.S., it may be worth trying with both Quest and Labcorp labs (the two biggest labs in the U.S.) to see if you get the results you need for insurance coverage of the gamma globulin? this below link is for the IgG subclass test with Quest Lab: IgG subclasses (and you get a total with it at Quest). http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7903 personally, i did the test with labcorp labs, not quest labs. and i just tried to find the same test at Labcorp. i think this is it, but the URL is very very long! It is LabCorp Test Number: 209601 https://www.labcorp.com/wps/portal/!ut//c1/hY3dCoIwGECfxQeIfZu29FJLbbDNyUrUGzGpsPwDLamnzxeoOJeHw0E5WujKZ30tp7rvygalKKdFbFMZE0nAFiQAYlIP1lsfQ0gXn333AH9que_bM8pQvimOvqUxc0yIQk2AaTOyJJGU2oAOKAWr0DcYBB878XYixcUk-KUadWUmnjU0btupQGHmz4KzWeyK5MWr-9Ft1Ek9XMNYHtnPx9CmM17FxgfXAhhT/dl2/d1/L3dJdyEvd0ZFQkZRQWhBQSEhL1lJNXcvN19VRTRTMUk5MzBPR1MyMElTM080TjJONjY4MA!!/?itemId=408155#7_UE4S1I930OGS20IS3O4N2N6680 _______ UPDATE: I state this later in this tread, but it is worth repeating in the first post, after 5 months of being on this protocol: apparently there is not a set amount of gamma globulin or brand of gamma globulin that all doctors use across the board. unfortunately, each patient has to find: - the right amount for them personally - the right brand for them personally (different patients do well on different brands) - and the right mode of administration for them personally (IV vs IM vs Subq shots) good luck!!!