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Gamma globulin

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Rrrr, Feb 18, 2014.

  1. susank

    susank

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    Last edited: Aug 7, 2014
    merylg likes this.
  2. Daffodil

    Daffodil Senior Member

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    did another 1gram IG infusion last night. slept entire day today. was so tired, i could barely turn over in bed! bad fog too.

    i havent taken cowden protocol for 2 days, not sure when to restart. dont think i can take 2 separate things that make me so sick.
     
    merylg likes this.
  3. justy

    justy Senior Member

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    I have just heard back from my Dr and he wants me to do gammaglobulins IV - multigam 10g IV per month at a cost of 480 euros per month.

    I have read this whole thread, but now cant remember if this is high or low dose. I know the cost is good- I was just told by a clinic in London that they do gammaguard by IV and it is £800 a pop. The London clinic also offers subq injections of a different GG product at £75 a shot once or twice weekly.

    It may be that once monthly trips from London to Belgium could be OK by train, with one night stop over to rest after the infusion - it's possible I could stay with my mum and that she could come with me. I am not sure how long the Dr wants me to do them for, so we will see when I have a consult next week (by phone).
     
  4. Daffodil

    Daffodil Senior Member

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    Hi Justy. That is a great price but I thought your doctor gave it every week? If it is only once a month, then I would definitely do the monthly train trips if you can!

    This doctor usually does it for 6 months.
     
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  5. justy

    justy Senior Member

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    Thanks Daffodil - i'll be speaking to my doctor next week by phone, so will quiz him further. The London clinic told me they may not be able to treat me if I am seeing another Dr as it may be a 'conflict of interest' - my appointment with their doctor is not until November, so I will have to see. Its nice to have options though.
     
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  6. Daffodil

    Daffodil Senior Member

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    why not infuse it yourself with a subQ pump? thas what i do
     
  7. justy

    justy Senior Member

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    I'm not prepared to try treatments at home that could cause adverse reactions etc. I live in a VERY remote place, an ambulance would take at minimum 30 minutes to arrive, and I have anxiety issues.

    I definitely want to be in a nice safe clinic with nursing staff to look after me in case anything happens.
     
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  8. Daffodil

    Daffodil Senior Member

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    Hi Justy. That is understandable. I would say 10 g a month is not a high dose...the usual dose for IG is 20 - 30 I think. Many CFS docs prefer the lower doses.

    Best of luck!!
     
    Sushi and justy like this.
  9. deleder2k

    deleder2k Senior Member

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    If you do IVIG, I think 1 time each month is necessary. If you do intramuscular I think you need to do it once a week. If you doctor in Belgium prescribe you with a medicine, can't a medical centre or something help you inject it? If you get it intra muscular that should be possible. You can buy all the medicine you need in another EU country (for up to a year I think)
     
    vli and justy like this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What doses have u seen IM used??
     
  11. deleder2k

    deleder2k Senior Member

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    vli, NK17 and heapsreal like this.
  12. justy

    justy Senior Member

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    Thanks @deleder2k for the suggestion. I'm not sure though that I could find a clinic to do the injections here. I live in a very remote place, there are no home nursing services etc, or private clinics in the area.

    At the dose you mention, how many shots IM a week would that be - one or two? Silly question perhaps, but I understand that the IM is a deep intra muscular injection - sounds VERY painful - what do you think?
     
    vli likes this.
  13. deleder2k

    deleder2k Senior Member

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    5 ml every 7 days. 5 ml is much, so I guess you have to do two shots. I reckon it is not comfortable, but my doctor frequently prescribes for that dose regime. It can't be that painful :)
     
    Last edited: Aug 18, 2014
    justy likes this.
  14. justy

    justy Senior Member

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    My Doctor is suggesting 10gm a month, as an IV infusion- that sounds like a lot then in comparison to what your doctor in Norway is suggesting. Not sure i'm comfortable jumping straight in with a big dose.
     
  15. deleder2k

    deleder2k Senior Member

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    I'm not sure if it is a lot. What my doctor is prescribing is low compared to standard treatments with gammaglobulin. I am not sure why the dose is only 0.825g a week. I think she figured out that that is enough to produce the effect. I really don't know. I don't think you should worry. There are almost no known side effects.
     
    vli and justy like this.
  16. Charles555nc

    Charles555nc Senior Member

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    benedryl has helped every one of my symptoms, including anxiety, when im having a herxheimer reaction. Now I wanna try gammeglobulins! :)
     
  17. Charles555nc

    Charles555nc Senior Member

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    I want to try gammoglobulins but my labs tests were low but in the normal range, so my doctor wont try them. Is there anyway I could get them online or convince my doc that normal isnt always acceptable?
     
  18. deleder2k

    deleder2k Senior Member

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    Helen likes this.
  19. Daffodil

    Daffodil Senior Member

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  20. susank

    susank

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    Hi - I wanted to check in. I have had a rough past few weeks.

    I tripped and fell on my left side/hip - pain everywhere. As if I were not already in enough pain.

    Overall I am just at a loss as to what to do.

    I feel like I am dying by inches - and don't know from what.

    Something is getting worse and I don't know what that something is.

    I am questioning my Lyme/Bart H Dx even though I tested positive.

    Maybe the Lyme culture test was contaminted (per the CDC) and maybe my WB blot bands are cross reactions from other pathogens. Whatever - I cannot handle the antibiotic treatments anymore. Am trying herbs.

    My eyes and mouth are even more dry and painful. Sjogren's and all autoimmune tests negative. Though I have never done a lip biopsy. Don't want to endure another unreliable test.

    Headaches, head pressure and brain fog worse. Have stopped Doxycycline.

    The only thing I am certain I have is CVID. My new insurance approved me for SCIG/IVIG which was a big relief.
    But maybe I am not tolerating the Gamma now either.

    Sorry for such a pitiful post.

    I did want to mention - if I have not done so before - that I noticed something with my Globulins and A/G ration from the simple CMP's (metabolic profile).

    Pre 2006 my Globulins and A/G ratios were normal.

    2006 is when I crashed. Sjogren's symptoms and worse. Lyme? Bart H?

    Starting in 2006 on my CMP's my Globulin levels fell low/out of range - A/G ratios went high/out of range.

    Something triggered that - but what?

    No doctors commented on it. But I have read and seems to me that when those values are abnormal that's a clue
    that something is wrong - probably with the immune system.

    In 2006 one doctor did run a GAM panel - showing low total IGG. That was overlooked.

    Finally in 2010 another doctor checked and I finally got the HypoG/CVID Dx.

    Have others checked their bloodwork over the years? The G's and A/G ratio on the CMP?
     

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