Starting LDI Injections 

12 Jul

  
LDI Injections 

I’m starting LDI Injections this week or next. I have my IVIG Wednesday and my home nurse said he would do them for me but they forgot to prescribe the prednisone with the syringes. The doses in the picture are 12c/12.5c/13c. I am also going to ask about the sublingual LDI. 

For those unfamiliar with LDI or LDA just google “LDI injections for Lyme disease” and it will explain more than I can or have the energy for. Hopefully these will make me feel even 5% better since I feel like I’m declining. My CFS is worse and may pain is severe so the morphine is no longer doing much. I’ve had every pain option there is so I’m running out of options. Still waiting on Ketamine infusions. Basically I’m home bound but I can walk now but once I sit in my chair I don’t get up. I just watch tv all day/night in pain. That’s pretty much my life right now but it is better than when I was bedridden and in a wheelchair. 

I found out my IVIG study program may not be 100% convered like they told me it was. I received a $6,000 bill. I think the IVIG is costing me $700 per infusion but they were $550 before the study program and that included the nurse. We are still trying to figure it out but I can’t afford that. 

Keep hope alive and never give up! Fight! 

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3 Responses to “Starting LDI Injections ”

  1. Brian July 22, 2015 at 1:09 am #

    Bryan, have your nurse train a family member to do Sub Q on u. It is effective and will save you a lot of $ over IVIG in the long run. I use gammagard too but there is actually a new product out called Hyqvia which is dedicated for Sub Q.

  2. su May 6, 2016 at 7:06 am #

    How is the LDI working for you? I started it a year ago and it’s been fantastic, however, my LDL is now very high and I’ve gained 12 pounds. I can’t get anyone to tell me if these are related to the LDI or not.

    • 49er Bryan May 9, 2016 at 9:31 pm #

      I’m not sure, I could no longer afford it. I didn’t notice much of a difference. Not sure about the weight gain, have you checked your thyroid?

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