Future Appointments – LLNP & UCSF

4 Feb


Future Appointments – LLND & Pain Mgt

I will be going for my first visit to the Gordon Group towards the end of February to see NP Mara Williams. I talked to her daughters a few times last year (one has lyme) and I know her from her book Nature’s Dirty Needle and her Twitter account. I have been feeling worse and all I want is something to give me a few good days each month. Right now the docycycline (third time on it) and minocycline are doing nothing. She does not take insurance as I know some have asked and this first visit is $400+ compared to $35 at Hynote’s office (sigh). But they did mention phone appointments for the rest of the year at $100 a pop and no travel makes me happy.

I will be going to UCSF to see my pain management doctor on the 10th of this month. Last visit I believe he mentioned getting Methadone as my next option but I have no idea what he will give me. For any new readers I have tried nearly every pain killer known so my options are becoming limited. I just hope after traveling that far and getting my prescription filled that my insurance will cover the new med. We already know they never cover most lyme meds so I always have my fingers crossed.

I have a lot on my mind and private things I cannot share about people in my life at this time. So I am pretty spacey and down lately but I always stay positive. Luckily I have my mom & best friends to help me get through these tough days. One of my newer friends has been there for me daily and I appreciate her a lot, she’s awesome. It’s good to find people who know exactly what you are going through not only with our health but with life problems. It really helps us get through those bad days where we just want to sit in pain and cry. I’m sorry I cannot be there for most others or reply to comments the way I would like. Things will get better though, I know they will.

Stay strong, stay positive and keep up the fight!!
















19 Responses to “Future Appointments – LLNP & UCSF”

  1. Tim McGrath February 4, 2014 at 11:33 pm #


    You should try Mangosteen at least!


    • 49erBry February 7, 2014 at 12:29 am #

      I tried it before but I will most likely order some soon. Just need to get some hard core meds right now since the lyme is out of hand.

  2. Christine February 4, 2014 at 11:40 pm #

    Wish you some relief and answers. God be with you and know you are inspirational. One thing i say is we now APPRECIATE those few good days. Sad most take them for granted.

    • 49erBry February 7, 2014 at 12:28 am #

      Thnak you and back to you. 🙂

  3. Lemons 'n Lyme February 5, 2014 at 3:51 am #

    Have you checked out goodrx.com? They have coupons for meds not covered by insurance… not all meds are on there but some are and you can just print off the coupons.
    I can’t wait to hear about the new appointment and I’m here for support :). Glad to know there are awesome people like you in the world, even if we have to suffer through the pain first (and yes… I’m STILL awake lol)

    • 49erBry February 7, 2014 at 12:27 am #

      I bookmarked the site thank you kind stranger. 😉

  4. Bill February 5, 2014 at 5:01 am #

    Just take care of yourself and know even people who have never met you are routing for you! No need to reply.


    • 49erBry February 7, 2014 at 12:27 am #

      Thank you Bill, hope you have been much better lately. Sending my best to yo.

  5. Jenny Schultz February 5, 2014 at 7:04 am #

    Your blog has been so helpful to me and so many others. Just know on those low days how many people are cheering for you! You rock and I so appreciate you! No need to reply, just know you are thought of by MANY.

  6. victorian February 5, 2014 at 5:08 pm #

    Methadone? That sounds like a disaster. I hope you are considering the Wilson’s temperature therapy I told you about. There is no recovery from Lyme with a temperature that low. I am taking 200mg minocycline once daily, have been feeling slightly better the past two weeks!

    • 49erBry February 6, 2014 at 11:58 pm #

      I forgot about it lol but I will look it up again I remember you mentioned it before and I looked it up. My memory is shot. Thanks again

  7. Dana February 5, 2014 at 5:46 pm #

    Stay positive and keep sharing it helps. I hope this new LLNP helps you. Also whatever pain meds they give I pray work. You do not need to be in pain too. Stay strong and well pray for you on your appointment days. I am glad you updated your blog.

    • 49erBry February 6, 2014 at 11:58 pm #

      Thnak you Dana. Hope you find better days ahead.

  8. SHERRY SMITH February 5, 2014 at 7:46 pm #

    Last week I had Lyme so bad plus a virus,,,,,,,,,I sat and cried for hours,,,,,,,,,,I know what your going thru ………….Im 18 years in with this horrible disease,,,,Im 62,,,,,,,,,,,I got because my ex husband would not walk the dogs and sent them to the woods to run free,,,,,,,,,,,,My parents also know what it is and I lost everything…………………..he took all the money tryed to kill me and broke my leg and had surgery 4 yrs ago…………..Im still standing and I press on,,,,,,,,,,,,,,,,he got all the money 500,00.00$ and now on disablity since 2008, lost my home , my belongings and know one will date me ( I have to keep it a secret) I was blessed with a son and I will be a new grandmother in March…………this keeps me going ( a baby girl) coming from Heaven,,,,,,,,,,,,,stay strong, what doesnt kill you , just makes you stronger……..God cares! Love , Sherry You hang in there and never never give up……………..ever til the end,,,,,,,,,,,,,!I am praying for you for a miracle that your life will change in 2014,,,,,,,,,,,,,God Bless this man who has been thru so much,,,,,,,AMEN! With God everything is possible Matt 19:26 Keep up the fight and be strong!!!!! Brian We care xo

    • 49erBry February 6, 2014 at 11:57 pm #

      thank you and all the best to you.

  9. karen kramer February 6, 2014 at 2:28 pm #

     Hi Bryan

    I am probably going to see Dr Green next(was with Hynote).  Wanted to let you know of something I have been using for about 1 month that has helped decrease my pain a lot.  It is called low dose naltrexone.  It is cheap, and can be gotten without a docs prescription, although Hynote had given me one.  My pain was primarily back, but had spent 30 years trying to fix it, and this has helped quite a bit, and has little side effects.  Then again I have autoimmune against thyroid, and it helps normalize immune, so maybe why helping me so.  Just fyi. Karen at kkramerdc@yahoo.com

    • 49erBry February 6, 2014 at 11:56 pm #

      Thanks I have heard of LDN but never tried it yet. I asked a doctor about it years ago but they told me it wasn’t a good idea for me, I don’t remember why. Where is Dr green located? Glad you found some pain relief.

      • Jenny Schultz February 7, 2014 at 4:59 am #

        The LDN helped me too…..

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