Update – IVIG Reaction, Blood Donors & A Sore Throat

26 Apr

 

blood donorsUpdate – IVIG Reaction, Blood Donors & A Sore Throat

After getting my second IVIG (gammagard) infusion last week I didn’t have the immediate bad reaction. I did however get some side effects starting on day 2 and I still have them tonight. I did get a slight migraine, head pressure and I could hear my blood rushing through my head for hours. My cognitive issues are worse so I am making up words more often since I cannot find the real words. My daily symptoms are 10x worse, my pain is more severe and I noticed my arthritis is much worse all over in every bone. I doubled my extended release morphine (MS Contin CR) to 180 mg per day (long acting pain killer) with 30 mg of Norco (breakthrough pain killer) and my medical marijuana edible and CBD oil but nothing is touching the pain or taking the edge off. A lot of tears of pain lately.

I am still waiting on my referral to be approved for my Ketamine infusions (for pain) at the pain center. The idiots denied my first referral that took forever to get then told me to resend a referral because they threw out the first one. I am also taking NSAIDS, Benadryl (for the IVIG reaction) and many other herbal pain killers daily with epsom baths. I have been much sicker and starting 3 days ago I have a swollen, painful throat now. I lost my voice yesterday. I thought it was strep throat again but it is not, this is different so I am not sure if this is from the IVIG or a bug from having family around me at Easter. I am usually in the house 24/7 and never around other people except my parents. I rarely go in public unless I need to get a prescription.

I would say the IVIG side effects (not bad reaction) are almost like having a flare or similar in ways to a herx. The bad reaction I had to the infusion, to be honest I would have literally killed myself if I had that pain for a week. My brain was so inflamed I couldn’t think, speak, breathe, move, see…etc. So luckily the second infusion only gave me side effects with no bad reaction so that’s a plus. I am doing a full dose (30 grams of gammagard) in 4 hours although I would prefer 6-8 hours next time.

I am pretty exhausted, I haven’t been sleeping well so I am sure I left out a lot of things that have been worse since the infusion. I have been on the verge of wanting to go to the ER but like I said before I have all of the same meds here at home that they would give me at the ER. The ER always treats me like I am just some freak that knows nothing so I hate when I have to go.

I also wanted to thank all of the healthy blood donors who are helping to save my life, my sister jewels’ life and all of the others who need blood, plasma…etc. I never donated blood because I always knew there were too many medical issues for me to feel good about giving my blood. Luckily I never did with having lyme. I always admired those who took the time to donate but I never knew one day I would need plasma from the blood being donated.

It takes 1000’s of different donors blood just to make one IVIG infusion. Hopefully there will not be a shortage on it one day because so many people depend on it. I need to do what I can to keep my numbers from going any lower and staying out of isolation. My sister is literally in a bubble and cannot come in contact with her own hubby and son. Without the donors and IVIG my sister may not be here today, she’s a fighter.

 

Side Note:

I hope all of my readers have a great weekend and maybe get to enjoy some sunshine. Whatever you do, do not give up! If you feel alone and depressed reach out to a friend or find a support group and make new friends. I love my spoonie family on IG/Twitter… they have been very supportive. I met some great people in support groups, one girl (my ex) that I love more than anything, one really best friend who is always there for me, and many others who have my back. If you have nobody around then I highly recommend getting on twitter or Instagram and look for others with illnesses. Don’t ever feel alone. Find the beauty in life, look around and when you find it smile. You are alive and breathing and remember someone always has it worse than you do. Take care friends.

 

 

 

 

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4 Responses to “Update – IVIG Reaction, Blood Donors & A Sore Throat”

  1. Brian April 27, 2014 at 7:11 am #

    49er, I hope that you have good enough insurance to make good use of your time for healing. Right now I am stuck on Medicaid insurance. I have to pay my LLND out of pocket and get reimbursement. The drug formulary is not impressive, but all the basic Lyme drugs are covered, along with my upcoming bicillin. I have an interview in a couple of days for a basic janitorial job ( I can’t work any job that requires concentration skills) that would give me a very nice medical plan. In the long run Medicaid insurance is a no go for me. And I want to be aggressive and get opinions from other LLNDS. Of course you can only do the best you can do, and as bad as I am, you are clearly feeling worse than me. I hope you have a decent working relationship with your new LLD. That is what counts most of all.

    On the matter of supplements, I started Vitamin C & Vitamin B complex (small dosing) a few days ago. Definitely the B complex is helping me sleep a little better. These are important water soluble vitamins and thus our bodies need them every day.

    • 49er Bryan April 27, 2014 at 11:07 pm #

      I have Medicare now but they do not cover my $325 appointments or lyme meds/tests…etc. I had Medicaid (Medi-Cal here) for 3 years and no income after I had to medically retire and go bankrupt. The only things that are usually 80% covered for me are ER visits, and non-lyme related stuff. It sucks. Good luck I hope you get the job! That would be nice to get better insurance.

  2. Sharon April 27, 2014 at 10:10 am #

    Bryan
    I have very recently started reading your blog and signed up for updates. You are an amazing inspiration to me. I am so sorry for the awful, horrible pain you are having and despite it you encourage others to find the beauty in life. I am having a very bad pain day and bedridden with this awful disease. Thank you for posting your pain, struggles, treatment strategies and genuine caring and helping others. You seem to have a gift for this and the goodness in your soul shines through. Don’t mean to sound sappy but it is true! I am too tired to tell you my story but you can read it on http://www.youcaring.com/sharons_story. I am not asking you or anyone to donate (closing soon anyway) but if you get a chance, please read and let me know if you have any advice for treatment for my situation. My daughter wrote intro and my story is under updates.

    • 49er Bryan April 27, 2014 at 11:12 pm #

      That’s not sappy I enjoyed reading that. Thank you for your kind words. I will check out your blog soon and read up on your story. I’m sorry you are struggling so bad but you are not alone there are always others just like us around to help. You have to keep going and be strong for your daughter/family. One day we will get better and have some of the best days of our lives. Will try to write back soon. Have a better night.

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