(I posted this is in the seeking doc section but thought more people might see it here.)
I'm posting on behalf of a friend with lyme, babs, and bart. She's having a TERRIBLE time--feels like dying--the pain is so bad. She needs a pain clinic or pain management specialist in NYC right away. They must be lyme and TBD literate. They must be able to deal with someone who has had to take morphine etc. This is a complex case.
Any suggestions are greatly appreciated.
Posted by lou (Member # 81) on :
If she is seeing a lyme doc for treatment, that doc may be able to recommend a place for pain.
Posted by sickpuppy (Member # 23846) on :
Yes she's seeing a lyme doc. He gave her a deadend lead and is also totally overwhelmed.
What I'm looking for is a name of a doc/place that someone has been to because of lyme/TBD related pain.
Please don't recommend that I google.
Posted by july (Member # 10469) on :
Sorry to here about your friend. I am in that same boat as far as pain goes. I agree the pain specialist needs to be lyme literate or they will pass it off as depression like the pain clinic I went to. TOTAL a--holes.
My llmd has just talked to my pcp and they are working together for my pain control. I have a wonderful pcp who has been trying to get my pain under control for 4 years now. She was happy to talk with my llmd and is very willing to work with him on this.
My llmd says "if your pain isn't under control, your body will not recover as it is not able to relax or rest." My pain keeps me up all night - I never get into a deep sleep as I need to change positions every 15-20 minutes.
Does your friend have a good primary care doc that would be willing to do this? (work with her llmd?)
I have been on several pain meds. They have just upped my fentanyl patch along with oxycodone and valium for breakthrough pain. I am not pain free, but I have noticed some difference.
Posted by lou (Member # 81) on :
Well, if the doc could not help, try contacting the support groups in the area. Someone else is bound to have this problem. There are also yahoo lyme state groups. Some are more active than others. Might check into joining the NY group too.
Where in New England is she?
Posted by minerva (Member # 20410) on :
i live with hellish pain and i would go to anyone who would treat my pain llmd or not.
not all llmd's are going to be great pain docs. even if its due to lyme or co-infections.
i am sure some of you will disagree with me but i think you tell doctors whatever you need to get treated. i ve learned to read what they are going to be able to hear and work from there. my needs at the time outway my desire for full discloser. in a better world it would be differnt.
so, i would look at seeing a CFS/fibro doctor or a rheumetologist (sorry about my bad spelling). i agree that a pain clinic might go for the depression saga but CFS/fibro docs probably not.
best would be a great llmd who knows how to treat everything but being in pain waiting to find someone could feel like hell. so, if someone shows up great but look for someone to get her through now... pain wise and then hopefully the right llmd will show up.
i love the idea of finding a local support group for lyme, chronic pain, cfs fibro or arthritis who could all provide a good local doctor. then you can ask what the doctors ideas are about treating with pain meds. you want someone who doesn't make you feel like some creepy drug seeking addict.
if there is a naturalpathic school of medicine they might have a clinic where they do pain management, low cost and more holistic who could add some support, they may or may not give pain meds but they could help along with another pain doc.
i really feel for them and so sorry its so bad. sending many good wishes that you will find support.
Posted by sickpuppy (Member # 23846) on :
Still looking for an LL pain specialist in NYC for my friend. Need a name
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