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!