I was officially diagnosed with Chronic Lyme Disease today by a Lyme doctor. They want to go ahead and start treating me for it with antibiotics. The issue is I have MVD scheduled for December 10th. Now I have to decide whether to wait to have the treatment and go ahead with the MVD or cancel surgery and start antibiotics.
I got to the point of deciding to do the MVD because my pain is just unbearable and I don't tolerate anti-seizure drugs well. I have bad side effects and would rather deal with the pain some days so MVD was my plan. The neurosurgeon does see compressions.
My question is does anyone else have lyme and GPN and did either treatment for Lyme (antibiotics) or GPN (MVD) help you take away or minimize the pain? I just don't know that I can take the pain anymore and don't know that antibiotics will take away my pain. If I don't get surgery in December I may have to wait an entire year until I can do the surgery because of my work.
I don't even know if any of it will help as I have had Lyme since 1999 and have never been treated for it. Any input is welcome! Thanks!
Sorry you are having such problems and have a big decision to make. Have you joind our Lyme Disease site http://www.lymediseasesupportnetwork.org as well. You may be able to get some answers from there. Wishing you all the best. Mary
For 8 years I have Lyme, aswell as neuropathic pain on my left head side, trigeminal neuralgia and GPN.
Initially I had facial pain on both sides for 2,5 years. After the first 2 antibiotic treatments the pain on the right side vanished for good but the left side remains until today
To summ it up, antibiotics treatment helped very well and did not help at all at the same time.
I also had 2 MVDs, one in 2014 and one in 2015. The MVDs made things a lnot worse. I had both MVDs on the left side.
If you have any questions please don’t hesitate to PM me.
I am sorry to hear you are suffering so bad, this disease is horrendous to live with. I had MVD 29th Sept 2014 and still on high dose of Oxcarbazepine, the surgery has obviously not been successful or I would have been able to have been of all meds by now, this makes me really sad and sometimes extremely difficult to live with, I don't tolerate the meds easily, I have horrendous side effects with them, I actually fell down the stairs a couple of months back due to dizzy spells and now waiting to have surgery on my shoulder due to tearing rotator cuff and breaking part of the bone off:-(
This is a life changing disease and very difficult to come to terms that this may never go away, when I was at my worst with pain, I always said that if I had the choice of the surgeon amputating my leg to take the GPN away, I would have jumped at at, I still do some times when it gets me down I get tired of feeling so bad every day :-(
Can I ask what meds you are on? How do you cope working with this?
Right now I am not on any meds for the pain because the side effects are so horrendous too. I couldn't take it. I have been on Gabapentin, Lyrica, Amitryptiline, Baclofen, Carbamazepine. So there are still some I can try, but it is just hard because of the side effects.
That's why I scheduled my MVD, cuz I can't take it anymore. But if this less invasive treatment (taking antibiotics) will help, I would think I should try that first, but I don't know if I can risk doing the antibiotics and still be in pain and have to wait another year for surgery. Andybysea & Mike, Thanks for your comments....
Well, if your Neurosurgeon says so, he will have a reason for not having the antibiotic treatment during surgery.
MVD is a quick procedure and will take you out for a few weeks at most, but antibiotics treatment might last for months. If your MVD is on Dec.10th then you might be able to start antibiotics in January ... this would not be a big delay.
Anyways, I wish you all the best and try to stay positve :-)