UCSF Appointment Results

16 Jul

ucsf

UCSF Appointment Results

I actually felt pretty good about how the appointment went. Although I was supposed to see 3 doctors at the one appointment there were only 2. Each doctor asked questions about my pain and illnesses and wanted to know what hurt the most. Then the main doctor recommended a pain patch called Butrans which he prescribed (through my primary). He says it will work better than Norco and is less addictive.

The patch will stay on and there is less of the up and down you get from oral pills and more of a constant pain relief so I can likely sleep at night. I asked for Marinol which will help with nausea and pain. The doctor recommended and talked about how medical marijuana is proven to help and how it has little side effects if any.

The doctor wants to put me on a cancer patient med once it becomes available called Nabilone. He says right now it is only available for stage 4 cancer patients with very little time to live and it is relieving their pain and seems to be a great pain reliever. So that may become available in the next year or two.

The doctor was lyme-friendly and said he has seen plenty of patients with chronic lyme disease. He actually said the words chronic lyme disease! He did say he does not know what is the best option for treating my lyme as far as antibiotics, herbals, rife…etc. He just told me to continue antibiotics and hopefully the new patch can give me some pain relief. He said as far as the lupus, fibro, CFS there wasn’t much he could do to help with that. I have a follow-up every 3 months.

There was some good and some bad as always with appointments. Although I did feel this appointment was a success for once. I would recommend visiting them.

The Cons:

  • Pain Clinic is not close to my home not sure why, Sutter has a pain management doctor near by but they sent me to SF
  • Took about 2 hours to get to the medical center
  • Parking $20 (public parking lot for medical center and no handicap spots had to walk 2 blocks), bridge toll ($11) plus a burnt lunch cost $25
  • Left at 8:30 am and got home around 3pm just for the one appoiment
  • They forgot I was there so I was in the waiting room for 1.5 hours and waited for each doctor to see me
  • The doctors said they have no idea how to help any of my illnesses and no idea what will help lyme they could only offer some relief for pain which was expected

The Pros:

  • Both doctors believe in chronic lyme and knew other patients with it
  • I finally got some pain patches Butrans and marinol
  • The doctors were really nice and listened without rolling their eyes or saying my invisible illnesses were not real
  • They were willing to help me and give me anything I wanted to give a try although I have already tried almost all the options
  • They were lyme-friendly!!

– Keep fighting the fight friends.

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7 Responses to “UCSF Appointment Results”

  1. Fed up! August 19, 2013 at 4:56 pm #

    Are you able to tell me the name of the docs at UCSF you saw who do believe in chronic lyme? I am in a situation right now with a doc who does not believe in CLD and I’m just at a loss. I have positive tests for Lyme. Thanks!

    • 49erBry August 20, 2013 at 9:16 pm #

      The doctor was Dr. Ramana Naidu in the pain center. He was very nice. Good luck.

      • Fed up! August 21, 2013 at 3:57 pm #

        Thanks SO much!

  2. Branwen November 4, 2013 at 2:38 pm #

    I am surprised they didn’t know how to help you though! The antibiotic protocols are well documented and available in literature…and they don’t seem very complicated if you don’t have any allergies to the antibiotics…. (I bet you know this already…I just started reading your blog today and haven’t gotten that far yet)…There is a book called “The Top Ten Lyme Disease Treatments” by Brian Rosner, and it details the classes of antibiotics and combinations of antibiotics which are most effective in targeting each bacterial form; spirochete, cell wall deficient, and cyst form. It recommends the Antibiotic Rotation Protocol, and in the first chapter, it details how to use it, and the principles behind this approach.. (one of the recommendation is to rotate the antibiotics every 45 days to prevent resistance) It also lists which antibiotics complement, as well as which contraindicate each other, which may be ineffective,(such as erythromycin) and which antibiotics actually can do harm in treating Lyme Disease. The book also addresses non-pharmaceutical treatments, such as effective herbal treatments. It’s great that they are open to your input in your treatment! I am in Upstate NY and there are no LLMD’s in my area, so I understand what you are saying about the long trips and expenses! I am trying to find an LLMD, but the closest I could find is a 12 hour round trip! MY PCP really wants to help, however, though he admits he is not knowledgable about CLD, and has never treated it before. So, I’m grateful that there is so much information about treatment out there!

    • 49erBry November 4, 2013 at 10:50 pm #

      Thanks for the info. So far I have tried almost all the rotating oral antibiotic combos, injections and some IV for about 2 years with no luck or progress. Right now I am starting over and cleaning the body and trying to get my immune going. Hopefully you find something that will work for you. Good luck with your lyme journey. take care

  3. Julie September 25, 2014 at 12:02 pm #

    Hello!
    We live in the Sacramento area. My adult daughter that suffers from Lyme is being referred to UCSF ophthalmology. She has vision changes from trigeminal neuralgia, optic pain and ? It was so nice to hear there are doctors there that treat CLD and care. Was there another doctor you saw? Blessings and prayers for healing!

    • 49er Bryan October 10, 2014 at 12:38 am #

      I don’t remember the names but maybe Dr. Lee? Good luck with everything.

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