Quick Update

23 Aug

ivig picQuick Update

I found a use for my POTS. I had the hiccups for a long time last night and I when I went to walk to my room, I passed out by my bed (dropped my ipad) and when I came to, my hiccups were gone! Yay!? My POTS is really active again and I have been passing out more frequently lately. I burnt my fingers the other night when I passed out and grabbed a hot pan to catch myself from falling.

Thank you for all of the comments and emails lately but I do want to apologize I haven’t been able to respond to many of them. I have been getting worse. My brain pressure is getting worse, my cognitive problems are worse. My memory has been much worse. So the lyme is really active in my brain again, I started taking minocycline again just to calm the lyme in my brain. I will be having my first Ketamine infusion ($650 OOP per infusion covered by Medicare) in a few weeks and a follow up with my LLMD to tell her that there is no progress on the Buhner protocol or other meds.

I received my immune blood work back and after 7-8 months of IVIG my immune subclasses have gone up a few points so that is good but still very slowly going up. The immune numbers can fluctuate on their own though. So my PID is not progressing as well as I was hoping but baby steps are good enough for me. I will most likely be taking a break from the IVIG since I get bad reactions/allergic reaction to almost every infusion and due to the cost ($500 OOP per infusion).

I will be taking it easy and focusing on my art to distract me from all of the extra pains so I will not be on the computer much to reply. I’ve had chronic pain almost half of my life but lately the morphine and other pain meds aren’t’ taking the edge off.  I hope you all are finding some answers, healing and having better days. Never give up!

 

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7 Responses to “Quick Update”

  1. Brian August 23, 2014 at 11:46 am #

    Sorry to hear of worsening. My advice is take saccharomyces boulardii. Most of the immune system is in the GI tract. And it took me a long time to realize that much of my brain problems were caused by c diff toxins. I am tentatively scheduled for c diff transplant in mid September.

    All the best to everyone,

    Brian

  2. Brian August 23, 2014 at 9:37 pm #

    If C diff is a problem with you, minoycycline and cryptolepsis will kill off good bacteria and make it worse. I just recently realized this myself.

  3. Brian September 6, 2014 at 9:23 am #

    Well, lyme 49er, I finally started my gammagard this week–subq. My tummy has been feeling a little sore from being poked by 5 needles. Too early to say whether it is going to help or not. Still sick but surviving.

    • 49er Bryan September 8, 2014 at 12:31 am #

      Good luck with the sub-q. It should help you start feeling a little better. My IVIG isn’t doing much for my PIDD but my immune numbers did rise a few points in 8 months. Stay strong

    • 49er Bryan September 8, 2014 at 12:31 am #

      Good luck with the sub-q. It should help you start feeling a little better. My IVIG isn’t doing much for my PIDD but my immune numbers did rise a few points in 8 months. Stay strong

  4. Albert Stern September 8, 2014 at 5:11 am #

    Why don’t you explore the possibilities of Rife treatment? The Rife equipment I recommend is made by a wonderful non-profit group called Spooky 2, http://www.spooky2.com/

    It really can help or even cure Lyme patients.

    • 49er Bryan September 24, 2014 at 2:04 am #

      Thanks, I have a rife at home and used it a few years ago. Might use it again soon.

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