January 8, 2007 - 6:14pm
I haven't really posted in awhile due to health problems but I wanted to post and fill everyone in on an issue I seem to be having.
just had my monthly follow up appointment with my pain Clinic's NP and she talked about starting a taper for me to come off of the narcotics. Now, I really don't have a problem with this but naturally I am apprehensive.
The reason is the 2nd round of blood tests (ELISA) I had for Lyme disease were positive and she is under the assumption that narcotics do not help with Lyme. I tried to argue the point that while they aren't perfect and I do have some issues but they still help and some relief is better than nothing at all. She didn't seem convinced. I also have other problems that I know are not related to Lyme such as herniated cervical discs and Stenosis, Neuropathy but because I have Lyme she thinks that all my problems are due to that. She told me that as I progress with the treatment I won't be in as much pain. I do hope that she is right but in the meantime I am still horrible pain and the only thing that helps is narcotics. After discussing how I felt she decided that we can wait a few months to see how I am feeling.
I have tried everything to manage this pain Every single non-narcotic medication, PT, Hydrotherapy, Biofeedback, Counseling, acupuncture, massage therapy, TENS, EVERYTHING !!
and nothing else worked. She wants to start taking me off of them and I am very worried. Why would someone mess with what works? It is all noted in my medical records, If they want to taper me off these medicines doesn't it make sense to wait until I show signs of improvement? I also don't think the added stress that I will endure due to withdrawal is something I need right now. When I no one knew what was going they did not have problems Rx'ing the meds now that I have Lyme it suddenly changes? I don't understand just because I now have a name for something doesn't make me hurt any less.
and I also have other issues despite having Lyme that need to be treated.
I do not know what to do maybe I should speak with the actual Doctor. Sigh If this was any other medication it wouldn't be a problem. I have been down this road before and the results were disastrous and I ended up being bedridden. I am just so upset right now I am beside myself.
If anyone has any words of wisdom or suggestions I would gladly welcome them.
Thanks
Quahog
January 8, 2007 - 8:05pm
#2
HI QUAHOG!!!
I AM SORRY ABOUT THE LYME DISEASE >THAT ALONE IS VERY SERIOUS STUFF. CERVICAL DISC HERNIATIONS & STENOSIS ARE VERY SERIOUS CONDITIONS -I DON'T UNDERSTAND WHY TAPERING YOU OFF YOUR PAIN MANAGEMENT REGIME IS HAPPENING. CHRONIC PAIN PATIENTS ARE A MISUNDERSTOOD GROUP, I HOPE YOU CAN GET THIS UNDERSTOOD & STRAIGHTENED OUT. IT IS GOOD TO SEE YOUR NAME UP HERE ON THE POSTS. I HOPE YOUR CIRCUMSTANCES IMPROVE GREATLY. GO TO THE MAIN DOCTOR WITH ALL YOUR MEDICAL RECORDS, TESTS & RADIOLOGY REPORTS, ALSO THERE IS A WEBSITE www.paincare.org PERHAPS THERE MAY BE SOMETHING THERE THAT CAN HELP YOU. I TRULY HOPE SO -KEEP IN TOUCH WITH US -BLUEANGEL
Hi Quahog,
That seems brutally unfair that the NP is going to d/c your meds because of Lyme disease. I would think the stenosis and herniations alone would warrant the use of narcotic pain medication. I would ask your NP to discuss this with the doctor, and also seek a second opinion. Admittedly, I don't know much about Lyme disease. After you posted this, I checkedLymenet.org and am still perplexed by this disease. It seems as though every medication they list, mainly antibiotics, are dismissed even though they are "recommended".
Sorry my friend, I wish there were more I could do or say to help, but I know next to nothing about Lyme disease, other than it is a tick borne illness. I will do some research and see if I find anything, but I know that you have already done this research, as you are the patient and the one experiencing the problems. Take care my friend, and please continue to let us know what is going on in your world.
Gtrplayer