diagnosed with lyme two years ago and on abx for same period. My biggest problem is pain in my foot. Burning, hot cold ect. All docs call it r.s.d. Pain is livable at times and other times I would amputate my foot to get rid of it. Been on tramadol for two years with only mild relief. I am seeking information of anyone who has had a nevrve block or an injection to kill the nerve. I am at my wits end and will try ANYTHING before i go crazy. Thanx for any input.
Posted by dmc (Member # 5102) on :
Bartonella caused my foot/nerve pain. Have you treated Bart?
Posted by Lymetoo (Member # 743) on :
Hope you can find a solution. I don't know anything about RSD, but you can do a search here by clicking on "search" in the upper middle of this page.
I know it's been discussed before.
Posted by MBB3 (Member # 13459) on :
Hello Kramer:
Can sincerely sympathize with the sensations you feel.
I know for a fact that a member here named Sk8ter (spelling?) has discussed RSD/CRPS as caused by infection rather than physical trauma.
Please search that user's name and/or RSD/CRPS and you should fine some info.
Take Care,
MBB3
Posted by kramer (Member # 15194) on :
yes i did test positive for bartonella- My llmd believes same meds for lyme are the best against bart. My meds , 300mg doxy twice daily and 300 mg biaxin twice daily havnt changed in two years I have also been tested repeatedly for the other causes of rsd[ diabetes vit def ect.] Only other possible cause is an epidural injection for back pain that was done a month before foot pain started. I have also tried lidocaine gel- which is useless . Anyway thank you all for your input
Posted by sk8ter (Member # 8671) on :
Please check your PM for my message.
Posted by sk8ter (Member # 8671) on :
There are stellant ganglion blocks that are used for RSD. It depends how long you have had this if they will be successful.
The latest is Ketamine infusions inpatient or out patient. Many people who have full body RSD have had these and they get 3-4 months of total releif. The severe cases of full body go to Germany and Mexico to have 5 day comas. It reboots the nervous system. But of course it has risks.
There is a 17 year old in Mexico who is a full body RSD caused by lyme and not the usual injury cause that had the coma and is still having complications probably from the lyme. Please pray for her. She has been there for 4 months now.
If you can get to a real soecialist they can assess you and help. I feel this is bacterial or viral etiology because they have done at least one study and found 70% of the RSD patients were pos to Parvo 12 virus.
If we injure a part of the body that the suspected pathogen is in it will release it in the nervous system. Just my two cents worth from experience. God Bless, WEndy
Posted by Rumigirl (Member # 15091) on :
Kramer,
Wowee, you need a new LLMD!! I hate to be so blunt, but your treatment sounds quite inadequate. To be in the state you are in and to have have had only the treatment you have had----well, it's not at all sufficient!
The same meds ARE NOT sufficient for bart as for lyme, with the exception of when you are just bitten for the first few weeks. But that is not your situation now. And your doxy dosage is low. And many LLMD's would use multiple abx at once and change them periodically.
Understand I am not a doctor, but this sounds serious to me. Please look into getting a better, more aggressive LLMD ASAP. Without the proper treatment, how can you get better? (I know you are trying). RSD is no joke (not that I need to tell you).
Also, Tramadol is pretty wimpy when it comes to bad pain. you may need to see a pain management doctor for the moment.
Oh, and a nerve block has steroids in it--a big no no for lyme unless life-threatening. Please keep us posted. I wish you good healing.
Posted by massman (Member # 18116) on :
I agree with Rumigirl. You already know how nasty it is but it can also spread. Have seen it begin in one hand then go to other + both feet.
Posted by kramer (Member # 15194) on :
thanks for all your help. I am seeing my llmd next week and I have alot of questions for him and some decisions to make