IVIG Pre Meds: IVIG Infusion With New RN

17 Jan

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IVIG Infusion

Wednesday I had my IVIG (Gammagard) infusion with my newer RN Bob (home nurse) who has only been with me through two infusions. This time I took all my pre-required medication (I will post below) before the infusion and things went a little better. With IVIG (human plasma) there are tens of thousands of donors plasma in the one dose. With that comes the chance of getting an infection the donor had but also a lot of side effects. Only had 2 rolling veins or vasospasm veins this time, that means only three starter kit 24ga needles were needed or 3 pokes.

Side effects range from headache, blood clots, acute meningitis, fevers…..etc. I’ve had very bad reactions and the acute meningitis with my first few infusions. So always make sure you hydrate well and take the pre-required meds. I received my new curlin pump since my last one was eating through the C batteries in 2 hours. The IVIG 32g dose took 5 hours to infuse. The 250ml lactate ringer took 2 hours to infuse after the IVIG was finished (I highly recommend the extra saline). It’s now Saturday at 1:00AM and do far I’ve had a few slight aches in the top of my head and head rush but no migraine or meningitis yet.

I had some really horrible news tonight of a family member and so far 2015 is off to a bad start as always so I’m trying to stay strong and stay positive for a better life coming. One day I’m going to find my wife who will love me sick and all and have kids who will give me a reason to fight everyday. All I’ve ever wanted is my own family and someone to love me for me.

Hope you are all doing better and hanging in there, hold on to hope. Sorry I haven’t caught up on comments lately.

Pre-required medication For IVIG Infusion I Highly Recommend

Bryan’s Pre-IVIG Combo

1000mg Tylenol
Pain Meds (I took 2 Norco 10/325 which also has Tylenol in it)
Water! (Hydrate with 8 plus glasses of water no matter how bloated)
Gatorade (use for the salt and electrolytes)
Electrolytes (I use E-Lyte Water it’s a life saver with POTS)
Anti-Anxiety Meds (I took lorazepam to relax the brain)
Benadryl 50mg (I take a generic brand from Amazon)
Claritin 24 Hour (take this and Benadryl for allergic reaction)
Caffeine (I drank a coke but tea or migraine pill may help the brain issues)
Soothing music
Relax and distract yourself don’t stress your brain during infusion

*the water or hydrating is the most important part so drink until you can’t drink anymore. I have to hydrate a lot due to my chronic dehydration and collapsing veins. Plus it helps plump your veins for the IV. The extra saline infusion afterwards also helps keep you hydrated later on. The E-lyte water, smart water or Gatorade will help with hydration also. The E-Lyte water can be purchased on Amazon an is a super concentrated electrolyte water in a bottle where you only need one cap full per day. The caffeine and anti-anxiety meds will help relax the brain. The Benadryl and Claritin will help with any allergic reactions & some side effects. Tylenol will help with fevers or pains. I tried different combos of pre-meds and so far this combo works best for me. But I also take my thyroid T3/T4 meds & 30mg of morphine hours before the infusion. Good luck!

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8 Responses to “IVIG Pre Meds: IVIG Infusion With New RN”

  1. Theresa Lee January 17, 2015 at 1:50 am #

    Hi, I have late stage lyme also. You’ve been getting these infusions for a while. I read how sick they make you. But are they helping ? Do you feel better afterwards or the same ? Do you think they’re worthwhile and what are they supposed to do to help fight Lynne and it’s coinfections ? You’re not the first lyme sufferer whose blog I follow that get these infusions.

    • 49er Bryan January 19, 2015 at 12:06 am #

      I would say in the 5 years treating maybe 1-2 symptoms are a little better and I don’t have the EBV (strep throat) as often. But don’t feel any better, if anything I am worse in that I can’t even get in a car for 5 minutes without wanted to puke and pass out. These infusions are for my immunodeficiency but so far my numbers have only went up a few points in almost a year. Most lymies take them to boost the immune to help the immune take over and kick lyme’s butt but I don’t feel any difference yet or any stronger, energy …etc.

  2. LymeZombie January 17, 2015 at 3:07 am #

    Hi Bryan,
    I’ve been reading writings for a while, now. You seem like such a very strong, yet gentle and kind person. I wish there was a magic wand to wave over you and make everything better. Though its not as good as the real thing, please know that there’s a lot of us Lymies, out here, that would like to give you a virtual hug. Feel better soon.
    June (bitten July 1998)

    • 49er Bryan January 19, 2015 at 12:06 am #

      Thank you much, appreciate the hugs and words and right back at you. We will all get through this.

  3. Lorie January 18, 2015 at 7:33 am #

    I pray this will end for all of us Lymies!!

  4. harriet moore February 22, 2017 at 7:06 am #

    I don’t know where the comment I started went to–somewhere into Lymeland I guess!

    Was saying I read all of your posts on ???? some website and was touched by your awful medical experiences and also your ability to be so kind and encourging to so many.

    Today is 2/22/2017 and I have finally found a doctor here who believes that maybe-maybe!-I have Lyme and tommorow I am having the beggining of a series of tests to look at this.

    I have so few of the sad and terrible effects so many of you have but my life is taken over by fatigue and brainfog–major! And as so many, my family thinks I am just–what?–don’t know what they are calling it among themselves.

    There is much to relate, again as with all of you, but I want to mainly shout from the roof tops that this is real–this is serious–so pay attention folks! No one in the Outside World takes this seriously.

    Bitten in PA and treated, was semi-okay, then moved to GA–no treatment, all is hush-hush.
    the treatment situation in the South sounds like a soap opera!!

    Bryan, I hop and pray that you are regainning health and we hear from you soon.
    Seems hard to keep on keeping on but we have to, don’t we?

    You know what Willie says, “Some days are diamonds, some days are stone.”
    And though the diamonds are hard to find what else is there? I am not ready to give up my life because of a tiny insect and human beings who are too–what?–stupid, self focused, unaware–yes, mainly talking about you, medical field and you, researchers–

    Well, enough! Bryan, you amaze me! And the rest of you–
    Hope all of you are still out there, growing in strength, finding a few diamonds–

    pagoda79

    • 49er Bryan February 23, 2017 at 1:52 am #

      I don’t have enough energy for a longer reply but I wanted to say thank you for the message first and second best wishes with your testing today! Keep us updated. Be your own advocate and don’t give up, eve if tests come back negative keep testing for everything. I’m so happy you found a good doctor! Keep up the fight.

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