I went to see the pain guy today and he seems like he really wants to help me. He also thinks I have nerve damage in my left leg/knee since it is so localized and accute (due to the Lyme Disease). Of course the other pain is sparadic as with everyone else. He prescribed Neurontin and Celebrex and Ultracet for when the pain becomes accute and really bad. I am also going to get an MRI of my spine to see if there is any damage there as well. That can cause the back and hip pain I am experiencing. It is a shame my LLMD didn't want me to see him because he is not putting me on narcotics and he wants to help my symptoms of LD until I can get better with the abx. If that ever happens.
I am pretty sure my LLMD is and LL. She, herself, had it in the 80's and knows what it is like. She is a cardiologist and started treating LD patients after she had the experience. She keeps up to date on all the newest studies and she is the only LLMD that I know of around here so I really have no choice but to go to her if I want to get treated. She wants me to see a Dr at Tufts and he is meant to be excellent! I have spoken to a few people here in my area and they speak very highly of him. He specializes in chronic Lyme and most of the people that I know that have gone to see him have been helped and are feeling better. I am not saying he is a miricle worker, but he has an excellent reputation. So I have nothing to lose. Right?? Nancy
Posted by Lymelighter (Member # 5310) on :
Nancy, be very careful w/pain ducks. In general, they LOVE Steroids and are not LL re: how Lymies react to steroids!
Is this purported Lyme specialist at the NEMC? If so, nothing to lose doesn't apply. I lost Big Time!
Posted by Lyddie on :
We're glad you had a good experience at the pain doctor, like us...I'm very curious about this Lyme doctor at Tufts. We're close to Boston and see the Lyme doctor everyone sees there. I''ve never heard of any other doctors who treat chronic Lyme in this area. Steere has moved to MGH but presumably his colleagues are still at Tufts. Be careful! But please let us know if in fact there is someone new at NEMC who is good...thanks.
Posted by lymie tony z (Member # 5130) on :
Hi Nancy, I'm no doctor I just know what I read and what makes me feel better or worse or has no effect at all.
Neurontin was on sixy minutes last year when a whistleblower proclaimed that he would give this to doctors and tell them it was good for pain(among other things) It never helped me at all......it's supposed to be a antiseizure med and this is supposed to interrupt the pain signal to the brain.....good luck with that approach.
Celebrex or cox2 inhibitors like Vioxx are immunosuppresive drugs...I really don't think you need to slow down your immune system when you're fighting an infection...these new cox inhibitors are said to contribute to congestive heart failure (study at cleve clinic where they may not know lyme but they do know hearts). No thanks for me but hey if you think this pain management guy is worth anything...go for it...perhaps the above is why your llmd did'nt want you to go to this duck. Good luck................the zman
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Posted by ELymeNancy (Member # 4930) on :
I have to say that I am so tired of feeling this way that I am trying to be as proactive in at least feeling better as I can. I do appreciate all of your replies and I am truly taking them into consideration.
I am seeing a Dr named Dr. Danta. Anyone know of him?? I am hoping he has something helpful to say. If not, I continue to stick with my LLMD here and see what happens.
Any input help my family and me become better informed. Nancy
I will let you all know how things go.
Posted by Lymelighter (Member # 5310) on :
Nancy, yes Dr. D. is a LLMD. You may want to edit your post and use an abbreviation. Unless otherwise instructed, most LLMD's prefer that you do not print their names on webpages, hence my abbreviated moniker.
He was a teaching hospital but it wasn't the NEMC(duck pond). He's now in private practice.
Do you have coinfections? If so have you treated them?
Posted by Aniek (Member # 5374) on :
Nancy,
It sounds to me like you found a real pain management doc. Congrats!
Pain itself can compromise the immune system. I think controlling pain is one of the most important steps in ridding our bodies of the Lyme.
I'm starting neurontin tonight. It's supposed to help with pain caused neurologically - I was prescribed it for burning pain in my legs and feet. We'll see what it does.
How much neurontin were your prescribed? I'm supposed to start with 100mg at night for 2 days, then 100mg twice a day for 2 days, then 100 mg three times a day for 2 days. Then I increase each time I take it by 100mg until I'm at 600mg three times a day.
Posted by ELymeNancy (Member # 4930) on :
Oops! I didn't know about that. I will not do that again. I was just egtting so much flack for going to another LLMD and I wanted to see if he was one or not and should I even bother to go see him. Aniek, I am on 200mg of nuerontin once a day (before I go to bed) then he will slowly increase the dosage when he knows if I can tolorate it. I am glad to have found him but I am causiously optomistic. If you know what I mean. Today is not a good day. I am having much pain and the weather here is so muggy I feel like I am being smothered! Thank God for AC. Nancy
Posted by ELymeNancy (Member # 4930) on :
Aniek, I forgot to say that I also have pain in my left knee down my leg to my foot and toes. The pain guy pointed to a nerve that runs right there. Stratnge how it follows that exact line.