Had My IVIG Infusion On Wednesday

8 Aug

ivig pic

 

IVIG Infusion

I think this is month 7 or 8 (? lost track) of my IVIG Gammagard Infusions. This is human plasma which is for my primary immunodeficiency (PID) in hopes it will boost my immune system since I was born without one or a very weak immune system I have had all my life. Most lymies have a secondary immunodeficiency caused by lyme itself or other illnesses. I had a very weak immune as a kid which allowed the tick bites/lyme and coinfections to enter my body and take over all these years. Most lymies may have a strong immune system but at the time they were bit their immune was compromised by maybe an illness which allowed them to get lyme also. My immune numbers are very low right now so I am hoping they do not drop any lower where I need to be in isolation for months, years.

On Wednesday I had my full dose IVIG infusion with my home nurse. Everything went fine this time, no collapsed veins or any extra needle pokes. I took all my pre-infusion meds which seem to help. I have had very severe reactions from the infusions and this last month the bad reaction came the next day, which will be tonight so I am keeping my fingers crossed I don’t wake up with the bad reaction again, it is very painful and scary. The severe reaction causes my brain to swell and I can’t move at all, talk, think, read and I can’t text my mom to tell her I need help. My brain will hurt so bad, a lot of extra body pain, fever, chills and all I can do is lay in my bed trying to catch my breath and crying. Last night after the infusion I fell asleep early for once and slept pretty good but I soaked my bed more than usual in sweat and felt very spacey. I am waiting on my test results to see if my numbers have gone up or down since the infusions. Staying positive and hoping for better days! C’mon immune we can do this!

 

 

 

Pill Pile (with my cat Zoey)

I was looking through my old pictures and saw this one I posted March of 2013. This pile was a little over a year of mostly all Lyme meds (minus my huge cabinet full of IV stuff) that was in my closet I collected but I threw it all away. This is pills, herbals, injections and stuff like that. Probably 98% of these are empty so most of my daily meds were not in the picture. I literally have a home pharmacy and everything the ER has I most likely have it too. The ER is very unhelpful as many of you know so even when I feel like I am dying I will just rough it and stay home to avoid the medical bills and feeling humiliated at the hospital. This past month I have been crying in pain a lot more than usual and I am a pretty pain tolerant guy although I have severe chronic pain for the past 15+ years. I like to share this picture so those who think Lyme is curable or an easy fix can see the reality of it.

 

pill pile

 

 

Keep your thoughts positive and keep on fighting for those better days. We can do this we just have to believe in ourselves and our bodies. Don’t ever give up, life is a beautiful thing.

 

 

 

 

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4 Responses to “Had My IVIG Infusion On Wednesday”

  1. vicky706 August 8, 2014 at 7:22 am #

    Hey Bryan,

    I too am getting IVIG infusions due to crash of my immune system. I have neuropathy so bad, I am really about done fighting this.

    I am crippled in pain that no-one can explain.

    And I can’t find a doc who will help me.

    So, I too lie around my home and wait for a miracle.

    If you are available to talk with me, I would like that.

    Let me know.

    Vicky

    SWIFT SMART SOLUTIONS

    Vicky Swift / President

    [P] 847.283.0272 [C] 847.507.8049 vicky@swiftmediagroup.com

    From: Lyme Inside – Living with Late Stage Lyme Disease <comment-reply@wordpress.com> Reply-To: Lyme Inside – Living with Late Stage Lyme Disease <comment+r15bg_ldim-n4lfmt3x7xdq@comment.wordpress.com> Date: Friday, August 8, 2014 3:12 AM To: Vicky Swift <vicky@swiftmediagroup.com> Subject: [New post] Had My IVIG Infusion On Wednesday

    49er Bryan posted: ” IVIG Infusion I think this is month 7 or 8 (? lost track) of my IVIG Gammagard Infusions. This is human plasma which is for my primary immunodeficiency (PID) in hopes it will boost my immune system since I was born without one or a very “

    • 49er Bryan August 9, 2014 at 11:58 pm #

      My memory is so bad so I will most likely forget to email you. I am not doing so well but I wanted to reply to all my comments on my blog tonight. Don’t give up! Contact Barb at lymedisease.org and ask her for a lyme literate doctor in your area. I’m sorry let’s hope those better days will come for us both.

  2. journey through Lyme August 10, 2014 at 7:26 pm #

    What a lot you have been thru ! Exhausting to do battle w Lyme & other things . Rest well ! Hope tomorrow is a better day

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