Chronic Pain Whatever the cause, support for managing long term or intractable pain.

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Old 02-16-2007, 12:47 PM #1
Quahog Quahog is offline
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Quahog Quahog is offline
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Location: South Paris, Maine
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My Mood: Pain Doctor Received my Letter
10 yr Member
Default Pain Doctor Received my Letter

Sorry for starting another thread but I felt this needed it's own


Well the pain doctor received the letter and it looks like he agrees with the Nurse Practioner.
He won't raise my medications. I spoke with his RN who told me that they did not mention taking me off all medicines but I already know that is the plan. He said he would refer me to a Neurologist. Seems to me like they no longer want me as a patient and did not believe one word of my letter. At this point I am out of ideas. I firmly believe that I do not have Lyme disease. In fact three other doctors have already said so including an Infectious disease doctor, He did not need to see me because my tests were negative.

I am angry and do not know what to do anymore. I have seen so many doctors and this pain clinic was the last. Well, one thing I do know is that I am not going to see that NP anymore.
I have made an appointment with the pain doctor pesonally but at this point it is doubtful I will keep it. I never should never have signed on with a pain clinic. It seems that when you do this happens. My PCP has ordered a new MRI of my C-spine. It also looks like my Lymphocytes are high. I don't know what this means at this point but I am in large amounts of pain and if his intention is to keep on lowering my meds than I am in big trouble.

I suppose I could ask if my Rheumatologist would take over but I really couldn't stand if if another doctor said no. BTW He also feels I don't have Lyme.

How do I start over when I have all these medical records and doctors notes? Seems with all this it wouldn't matter.

Last edited by Quahog; 02-16-2007 at 01:03 PM.
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Old 02-18-2007, 03:02 AM #2
tangye5 tangye5 is offline
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tangye5 tangye5 is offline
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Smile reply to person who has had trouble with pain manment and not conclusive Lyme dx.

Most patients with Chronic Borrelia infection and immune depression are often found to be negative on tests for Lyme Disease. Please get a reputable Lab like IGeneX to run the polmerize testing that track the bands. It only took them 10 years, 15 surgeries to include a brain rupture and multiple ortho. surgeries and 20 odd doctors to finally get out of the wheelchair, off the oxygen and regain my life. I am on narcotics for the pain, but it feels so good to have my life almost normal again. You need a Lyme doctor, I have been to all the others and MS or possibly ALS is what they came up with. There is a great deal of nerve pain with my Lyme because it is now in my red blood cells and cystic. Also I have two types of Babesia which is a co-infection. So do not despair but get to a doctor that speacializes in this horrible disease. I was negative on the Elisa, questionable on the Western Blot, but when I had the thorough testing by IGeneX -- I was found to have Borrelia Hermsli, Borrelia B. and Babesia Microti and Babesia WA1. I have been on IV therapy for 19 months and am getting better all the time. I know IT sounds like a long road. For me, the bouts of malaria like symptoms, brain fog, pain jumping from one joint to the next, the ever so horrible fatigue, the sad feelings because I could no longer run or play tennis or lift my firstborn Grandchild once he got to be 15 lbs. etc. etc. etc., just made me stronger mentally because I knew I had a medical problem and my nursing degree certainly came in handy because I knew I would find the answer. Listen to the many of us out there that are saying we understand! tangye5 P.S. Had cervical spine C4and C5 replaced in August. Waiting to have two ruptured disks in L5-S1 done at later date. Same knee problem you have and tumors growing all the time because of a high tumor necrosis problem--Remember you are not alone--just need the right doctor Lyme Literate.

Last edited by tangye5; 02-18-2007 at 03:11 AM. Reason: Spelling
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Old 02-18-2007, 06:27 PM #3
Quahog Quahog is offline
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Quahog Quahog is offline
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My Mood: Pain Doctor Received my Letter
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Thanks for responding

I have had numerous tests through Igenex and my last PCR was negative on all bands both IgG and IgM. Co-Infections were also negative. I have been seeing a Lyme Doctor. He isn't sure that I have Lyme but, he has been treating me for it. I have been taking Abx for the last 6 months. He does feel that there are other issues going on and he wants me to be re-evaluated for cervical stenosis/Myelopathy. Seems to me he is right about questioning the Lyme. My knee problems are from years of running track when I was in Junior high school, High school, and college.
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