LLMD Phone Appt & IVIG Infusion Today

16 Apr



LLMD Phone Appt & IVIG Infusion Today

Just a quick update. I haven’t been feeling well at all for the past 2 weeks. Feels like a flare but a little different so I’m not sure. All my symptoms are worse and I wasn’t able to leave the house to buy a gift for a friend until one night I forced myself to go. I was extra dizzy and got car sick as soon as we left the drive way. I was hoping to travel for the summer to meet friends but I do know if I can hold up. I haven’t traveled (flight) since 1996.

I have a follow-up appointment today with my doctor from GMG. We will go over blood results to see why I clot and also bleed out. She will be seeing how the pain meds are working and how I am doing on the meds (herx). I haven’t had any herxing from the coinfection meds or any supplements she gave me. I will also let her know my heart is under control now and back to a normal POTS range. She may be adding in some new meds but I can’t remember.

My home nurse called and said she could do a night time infusion since she knows I am a night owl (lymepire). So the infusion should last about 8 hours and she will be coming over at 4pm. I will be taking claratin, benadryl, tylenol, water with electrolytes before the infusion begins. I hope I don’t have the same bad reaction as last time that was a living hell and hurt my brain so bad. Wish me luck with round two.


As for all of you, I appreciate all of your feedback and support and I hope you all have someone supporting you as well. Never give up this fight, we will all make it to the top. Have a day and smile.












7 Responses to “LLMD Phone Appt & IVIG Infusion Today”

  1. Brian April 17, 2014 at 8:22 am #

    49er, I hope your appointment goes well and that you make some progress!! ^_^

    I just received a 12 month authorization for Xifaxan 550 which I pick up this afternoon, YAY! I have been reading online and it seems a lot of people have literally been lifted out of disability with this drug and able to return to work. I’m hoping for the best, especially since my lab was positive. Thank goodness insurance is paying all–$900/mo. Will keep you all posted on my progress!

  2. SHERRY SMITH April 17, 2014 at 12:58 pm #

    Hang in there and dont give up I hope the nite nurse does a good job and everything goes just perfect. Happy Easter to you Jesus will be with you everyday God Bless Sherry 🙂

  3. shelley cannon April 17, 2014 at 8:05 pm #

    I do not have someone supporting me. The doctors do not believe I have chronic lyme. I really wish I could be treated, for this horrible thing called “lyme” has been attacking my bladder, and nerves for 14 years now. My symptoms did not show up until I was 34. I was bit by a tick on the top of my head at 14.

    • 49er Bryan April 21, 2014 at 5:33 pm #

      Do you have any LLMD’s you can go see? If not I can point you where to get LLMDs numbers in your area.

  4. Brian April 19, 2014 at 8:43 am #

    24 hour xifaxan update: IBS symptoms have definitely been better, brain fog is a little better. In a few weeks go back in for new Lyme regimen which will include bicillin la (new to me) in conjunction with orals. I am a little scared of the IM needles, and I have nobody to shoot me up.

    • 49er Bryan April 21, 2014 at 5:32 pm #

      That’s good. I hated bicllin. It may make you flushed. I had to self inject most because my mom had to work. It takes about 8-15 minutes to inject alone. It is thick as elmers glue. It is a larger needle so I hope you can get passed the needle part. Good luck!

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