UCSF Visit – Pain Management

11 Feb

ucsf

UCSF Visit – Pain Management

I took the long, torturing ride to UCSF yesterday. I was car sick in the first 5 minutes. It’s always good to see what the outside world looks like and see the sun though so that was a plus. I took some iPhone pictures I edited below of SF. I also had lunch and tried to enjoy the scenery but I was in too much pain and too sick to take it all in.

So the visit was not really what I expected. The Butrans patches have been burning my skin and I have red, square burn marks all over my arms, chest, back but they decided to keep me on the Butrans patches and up the dose to 20 mcg (all the FDA allows in the US). I asked for the best pain med they had just to have even one good day a month and the doc said “you are pretty much on it and there are no other options or better meds I can put you on that you haven’t already tried in the same pain med class”. He gives me ‘cancer patient/ chemo meds’ he said.

So my new treatment will be Butrans 20 mcg patches daily,  6 Norco per day, and Ketamine Infusions that he says is a special cocktail that he has a recipe for (not sure what else is in it).  He said I will need an anesthesiologist while getting the Ketamine since his cocktail can make me hallucinate, space out…etc.  I know Dr. H office gives Ketamine but not sure if it is this high of a dose or the same cocktail. I can get the Ketamine infusions as often as I need them each week (on top of the Butrans patch and Norco).

I will be also taking Methadone on the months I don’t use the Butrans patches so I don’t build a tolerance so fast. So I will stagger the meds such as Butrans one month then switch to Methadone then back to the patch the next month and so on. For me these meds just take the edge off enough each day but don’t really “stop” the pain. I guess you just kind of get used to the severe pain as weird as that sounds so I can seem like a person not in this much pain if you met me.

The Ketamine he says is to “reset my brain” and hopefully the pain will go away for a day or two while the other meds are still helping. Since I have so many medical issues and old injuries that cause all this pain this isn’t really 100% just a Lyme thing so I hope this doesn’t scare new readers with Lyme. Although the Lyme & Fibro do cause severe widespread pain so don’t get me wrong.

Now I just need to find a better PCP or hopefully my new LLMD office can write the scripts for all my new meds. There is no way I can drive to UCSF every couple days for Ketamine infusions so I have to find a near by place to do them. I know my current (evil) PCP will have a fit with all the new meds and probably refuse to write up the prescriptions (UCSF can only recommend the meds and my doctor has to fill the meds…if my doc refuses then UCSF will talk with them or fill them their self).

Never give up hope!

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UCSF 1UCSF 2UCSF 3

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14 Responses to “UCSF Visit – Pain Management”

  1. Posy Bass February 11, 2014 at 1:38 pm #

    Thanks for the update. Did you happen to catch yesterday’s Dianne Rehm show on NPR? She interviewed a woman who has written a book call “a nation in pain” all about the epidemic in this country of chronic pain suffers. I think I will order it to check it out. I can’t remember if you’ve tried cannibus oil? Eager to hear how your appointment at Gordon Medical goes! Best of luck, posy

    • 49erBry February 12, 2014 at 10:16 pm #

      No I didn’t catch that. I pretty much juts watch my few tv shows and that’s about all my brain can handle lol. I have some cannabis oil topical but it doesn’t do much. Thank you.

  2. HealthyMasters February 11, 2014 at 6:09 pm #

    Good luck with new treatment… Stay strong and soon you will be pain free!!! We will all get there!!

  3. Kate February 11, 2014 at 7:44 pm #

    Wow! You took such terrific pictures. Thank you for sharing them with us.
    Glad to hear that you that your appointment at UCSF went well. It seems they care and want to help.
    Do you know if the they install Pain Pumps there. Dr. Grigsby the Director of Napa Pain Institute implanted one in me many wears ago for the bone pain I have from CNS Lupus. It has been a saving grace for me . I find it helpful for Lyme Pain too. It certainly is better on the other organs as well as the med is delivered through the spine via implanted catheters. I still take oral meds for breakthrough pain as necessary. You may want to keep his name for future reference.
    I too am going to try Gordon Medical but fear it may become cost prohibitive if they can not have access to my records. I was a patient of Dr Hynote 13 years and have invested Beaucoup $’s trying to manage my health.
    Let us know how your appointment goes with their office and if they will continue the protocols that Dr H had you on.
    Thanks again for helping all of us .

    • 49erBry February 12, 2014 at 10:13 pm #

      Thank you. I have no idea about the pain pump i’ve heard of them but they didn’t mention it as an option. Did your surgery heal okay? Let me know how Gordon group goes.

    • Kathie Hewko March 13, 2014 at 6:39 pm #

      Hi All
      New to this format. There is a 100% chance I’ve had Lyme since a little girl-62 yrs. reinfected in 1985 & problems since. 8 yrs ok not anymore! I go to dr Stricker. Seem to be going downhill -Lyme, babesia & bartenella now that new miy???from Stanford. Yippie.
      Head pain is unbearable. Energy very low. I live in my past – and just do what I can. I know there is life after Lyme!! I’ve been there once before.
      Enjoy every minute you can!! Smile.

      • 49erBry March 15, 2014 at 12:40 am #

        I’m sorry I wish I could help all of my fellow lymies. I hear Stricker is not the greatest of the LLMDs none of my doctors seem to like him. We just have to do what we can and try to enjoy the beauty of life no matter how sick we are. Hope is all we have. I wll enjoy every minute and you do the same, keep smiling and never give up. Hope you can find maybe a better doc or something to give you better days.

  4. Mom February 11, 2014 at 8:32 pm #

    Your pictures are beautiful and you made them more glamorous than I remember. Let’s pray that the Ketamine will find you some interruption of such horrid pain and find you some relief. Love you Son

  5. SHERRY SMITH February 11, 2014 at 8:48 pm #

    Hnag in there, we are always in pain one way or another,,,,,,,,,,,,,,,,,Norco seems to help on these dark and cold winter days,,,,,,,,,,,,If I lived in Florida or warmer climate I would be a new person for sure. I cannot stand the pain of winter,,,,,,,,,,,,Im always tired and lots of pain,,,,,,,,,,,Keep ahnging in there,,,,,,,,,,Im working on trying to move to a warm climate asap as sprng arrives……………….I know I would be a different person for sure if there was No winter and maybe be able to hold down a part time job Praying for you Sherry

  6. Dana February 12, 2014 at 6:35 pm #

    Love the pictures San Fran is one of my favorite cities. Glad your pain management Dr was helpful. I hope the new treatment helps ease you pain.

    • 49erBry February 12, 2014 at 10:04 pm #

      Thank you, hope you are having better days.

  7. victorian February 23, 2014 at 4:38 pm #

    Nice pictures. Glad you have new Lyme doctor. As soon as I am on better insurance I am going to be seeing a new LLND….

    • 49erBry March 2, 2014 at 12:52 am #

      Thank you. Yeah it took me 3 years before I had Medicare so it was really putting me in debt. My current LLMD doesn’t take insurance so the visit/meds/IV was $900. The LLMD that passed away did take insurance so it was nice 😦 Hope you find a good doc who can help.

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